Shadows of Resilience

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In the quiet of the morning, when light begins to breach,
There lies a silent warrior, with strength you cannot teach.
Multiple Sclerosis, a name whispered with fear,
Yet within its shadow, courage blooms, oh so clear.

Each day is a canvas, painted with strokes of pain,
But also with moments of joy, a reminder that we gain.
The body, once a temple, now a puzzle to solve,
With every piece that shifts, we learn to resolve.

The nerves, like pathways, sometimes lost, sometimes found,
Guide us through a maze, where silence is profound.
Each step might falter, each hand might shake,
But the spirit within, oh how it does not break.

Through blurred visions and tremors, through numbness and ache,
We find new ways to dance, new paths to take.
With every MS flare, a lesson is taught,
Life’s beauty is not in the battles that we’ve fought,

But in the moments of stillness, in love and in laughter,
In the bonds we create going through life’s disaster.
We adapt, we adjust, we learn to embrace,
The life that MS gives with a unique kind of grace.

So here’s to the warriors, with scars deep and wide,
To those who see MS not just as a tide,
But as part of the journey, a chapter to pen,
With resilience and hope, again and again.

___________________

I also want to share this post of my favorite poem for this Christmas season.
I hope you enjoy it.

A Multiple Sclerosis Night Before Christmas

’Twas the night before Christmas, when all through my body,
Not a nerve was behaving, making me move rather shoddy.
My daily activities were chosen with care,
In hopes that each one could be done from a chair.

Each word that I spoke seemed to come out all wrong,
So much to be finished, I had to stay strong.
And John in the kitchen, and Missy making frappe,
Everyone busy working, no time for a nap.

When somewhere outside there arose such a clatter,
I peeked through the window, to see what was the matter.
I tried to move fast, to get to the door,
But I didn’t quite make it, and wound up on the floor.

As I lay on the rug, making sure nothing broke
Through tears I could see it, even gave it a poke.
Yes, what to my wondering eyes should appear,
But the cane that I had lost, earlier this year.

Then the front door cracked open, and before me he stood,
I immediately knew help had arrived which was good.
And more rapid than eagles, his phrases they came,
As he whistled and shouted, and called them by name.

“Now hang on, now slow down, now take more life pauses,
With stressful, and chaos, and tearful day causes.
To the end of the checklist, to the end of the hall,
Now dash away! Dash away! Dash away all!”

And then I could see, as I wiped away tears,
Why, his words and his wisdom had settled my fears.
As I sat on the floor, too weak to even move
He knelt down beside me, and said I have nothing to prove.

He looked a bit weary, as a glance we exchanged,
And he said that my focus is what needs to be changed.
What’s important is family and those who are nearby.
(On that last one he spoke with a twinkly eye.)

Your weakness…it’s real. Your limits…real too.
MS has this way of making even brilliant days blue.
He smiled as he spoke, and I knew he was right.
No more pity party moments or MS fist fights.

He spoke not a word more as he helped me to stand.
I found myself smiling as I reached for his hand.
I sat on the couch as he gave me a nod,
He helped me to see that my thinking was flawed.

Then he sprang to his sleigh, and to his team gave a whistle,
And away they all flew like the down of a thistle.
But I heard him exclaim, “You’re doing great, don’t forget,
To pause more and smile, you have nothing to fret.”

Here’s how to explain multiple sclerosis

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Multiple sclerosis, or MS for short, is a condition that affects the brain and the spinal cord, which are like the control centers for your body. Imagine your brain and spinal cord are like a busy highway with lots of wires (called nerves) that send messages to different parts of your body, telling them what to do.

In MS, something goes wrong with the protective covering of these wires, kind of like if the rubber on the outside of a wire got damaged. This covering is called myelin, and it helps the messages travel fast and smoothly. When it gets damaged, the messages can get mixed up or slowed down.

This can make someone feel different things, like:

  • Tingling or numbness in their hands or feet, like when your foot falls asleep.
  • Feeling very tired even after resting.
  • Seeing things a bit blurry or feeling dizzy.
  • Muscles might not work as smoothly, making it hard to walk or hold things.

But here’s the important part: people with MS are still the same people they were before. They might just need to take a little more time or use different ways to do things. There are lots of treatments and ways to help manage MS, like special medicines or exercises, to make sure they can keep doing the things they love.

Think of it like this: everyone’s body is like a unique puzzle, and sometimes, some pieces need a bit more care. People with MS are just solving their puzzle in a special way, and they can still play, learn, and have fun, just maybe a bit differently.

Comparing yourself to others is a losing battle

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Either way you look at it, comparisons tend to be bad for us. They are bothersome at the very least. From birth our parents start comparing us with other children. Simultaneously, our teachers and coaches compare us with other children. We compare everything and anything these days. We compare our incomes, our houses, cars, children, and yes even our illnesses. In doing so, even if we feel we win in comparison, WE LOSE!

Just as we are all unique and cannot be compared, it is the same with illnesses. There is NO illness worse than another. ALL illness is terrible. When a person compares someone who has multiple sclerosis with someone that has another illness, they are speaking from a lack of understanding and through filtered lenses. No one can know what someone is experiencing unless they crawled into that person’s body to feel what they feel, and experience what they experience.

One of the most awful experiences is when you share your illness with someone and they proceed to tell you how their approach to MS or some other ailment is the only way you should be living? That you need to adjust your diet and get rid of meat, diet soda, and gluten. That because you aren’t living like they say, you are doing it all wrong? That if you only _____ (fill in the blank) you would feel better?

It can get extremely frustrating when someone assumes they know your body and your journey better than you do. Comparing illnesses or even progressions of the same illness between two different people never works out. When someone does the comparing like that, they have fallen victim to comparisons.

The problem with focusing on other people’s achievements is that you will never measure up. It can make you dissatisfied with your own daily activities and even gives you less strength to keep working towards greater things. Comparison is a thief of joy.

Instead of seeing how you measure up to another person, analyze yourself and ask yourself how well you are doing with the things you need to be doing for yourself. The only one we should ever compare ourselves to is ourselves…

Stay focused on your goals and what you want for life. There is only one of YOU in this world, don’t waste time comparing yourself to others. Instead, make your life count. Striving to live a life that is authentic to your own personal goals.

In the process, don’t get caught up in the envy of another person’s successes or goals attained. Envy is the emotion that you experience when someone else has or does something that you wish you could have or do. If another person gets positive results from a medication or a treatment that you wanted, it is natural to feel a jealous twinge. Instead, consider sending a note of congratulations and enjoying their success.

Focusing on gratitude helps, because much of what you’re grateful for involves the people around you… individuals who have looked out for you, mentored you, and cared for you when you were are your worst. That makes gratitude a wonderful antidote to negative comparisons. It reminds you that there are a lot of people around you who are contributing to your success and who love you.

You are loved for who you are. Don’t you ever forget that.

GoFundMe Support for Positive Living with MS

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Donate now
at GoFundMe

I am Penelope Conway, the founder and writer of Positive Living with MS and I am raising money to cover the yearly costs for my website at GoFundMe.

I was diagnosed with multiple sclerosis in 2013 and went about looking for information about MS, the drugs used to help, and healthcare in general. Some of the things I learned were great, some not so much, but all of it beneficial.

One thing that truly annoyed me was when I would visit support groups at that time I always left feeling worse than when I had arrived. Most groups were just woe-is-me sessions and left me with an icky heaviness inside. So my remedy was to never go back to them.

Can’t people talk about MS and still laugh and enjoy themselves without all the woe-is-me attitudes? I found few resources for positive encouragement at that time. A place to laugh, to cry, to share, to just feel normal in the midst of a life of chaos. That’s when I decided to start something myself, thus the birth of Positive Living with MS.

I don’t make any money posting things online I just gain great new connections with people all around the world. One of my most popular posts is MS Facts. Beware… there’s humor in there to talk about all the symptoms we deal with. My video is also a favorite which I plan to do more of this coming year.

I try to post on my blog once a week to talk about my own experiences with MS, and post daily on social media to facebook and X. I’m glad to be able to share my journey with everyone.

I use whatever reach I have to talk about multiple sclerosis: the good, the bad and the ugly. Some with humor, some with tears, but all with a matter-of-fact straight talk. I don’t sugar coat things to make others feel comfortable about the topic I’m discussing. I just tell it like it is from my perspective.

I no longer work due to the progression of MS in my body. I have trouble cognitively as well as with uncontrollable tremors and weakness.

I only have my social security benefits to cover my living costs and squeeze out all I can to pay for the website. Thank you in advance for your support.

Donate now
at GoFundMe

I’m a nobody

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I’m a nobody. I’m just a gal with a laptop, a blog, an X account and a Facebook account. Nothing special.

I was diagnosed with multiple sclerosis in 2013 and went about looking for information about MS, the drugs used to help, and healthcare in general. Some of the things I learned were great, some not so much, but all of it beneficial.

One thing that truly annoyed me was when I would visit support groups at that time I always left feeling worse than when I had arrived. Most groups were just woe-is-me sessions and left me with an icky heaviness inside. So my remedy was to never go back to them.

Can’t people talk about MS and still laugh and enjoy themselves without all the woe-is-me attitudes? I found few resources for positive encouragement at that time. A place to laugh, to cry, to share, to just feel normal in the midst of a life of chaos. That’s when I decided to start something myself, thus the birth of Positive Living with MS. I don’t make any money posting things online I just gain great new connections with people all around the world and learn a lot of cool things from them.

In addition to that…

I will use whatever reach I have to talk about multiple sclerosis: the good, the bad and the ugly. Some with humor, some with tears, but all with a matter-of-fact straight talk. I don’t sugar coat things to make others feel comfortable about the topic I’m discussing. I just tell it like it is from my perspective. If that’s not something you like, then I hope you find some other blog or page that helps you out better than mine. No feelings hurt here.

I love making my humorous meme’s and sharing my daily nonsense posts on social media. Some are received well, some with groans and others with huh? moments. But at least they get people talking and thinking. And on my blog I try to post once a week to talk about my own experiences with MS. I’m glad to be able to share my journey with you. One of my favorite posts is MS Facts. Beware… there’s humor in there to talk about all the symptoms we deal with.

If you want to help me pay the bill to cover my hosting and blog costs you can donate online here:

DONATE HERE >

Any financial help is always a welcomed blessing for me as I no longer work due to the progression of MS in my body. I have trouble cognitively as well as with uncontrollable tremors and weakness.

I only have my social security benefits to cover my living costs and squeeze out all I can to pay for the website. I used to be a web developer and graphic designer so my skills came in handy to build the site and keep it running.

Each year around this time I let everyone know that in a few months the bill will be due. Any amount given will be used to cover the costs. This year the total is $600. The price went up about $50 from last year, but I’m determine to raise enough to cover all the costs with your help. Thank you in advance for your support. And happy thanksgiving to you as well.

———-

I’m Nobody! Who are you?
Are you – Nobody – too?
Then there’s a pair of us!
Don’t tell! they’d advertise – you know!

How dreary – to be – Somebody!
How public – like a Frog –
To tell one’s name – the livelong June –
To an admiring Bog!
– Emily Dickinson

 

There’s a flurry of weirdness going on in my brain

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When people try to rationalize or downplay my fatigue, it can hurt. Many times it seems like the more I try to explain how tired my tired is, the more they try to fit it into their little perception box. Understandably so, they aren’t the ones living with it, but sometimes I just wish I could give them a taste of what my fatigue actually feels like. Maybe then they would get it.

I spent my night with a random flurry of weirdness going on in my brain. My thoughts had no reason and made no sense. I have an overactive brain that just won’t shut up especially when night comes. It just feels so uncomfortable having a torrent of random weird thoughts and questions hitting me every time I try to sleep. I have realized the questions are so odd that most of them are unsolvable.

To go with my busy brain, my body is filled with pain, dizziness, breathing difficulties, tossing and turning, and muscle spasms all disrupting my comfort. A night of sleep… I wish!

But did any of my night time questions or thoughts come to fruition? No. When this happens I pick up a notebook and pen to write everything down. I can guarantee you that when I read them later I’m always thinking omg, these thoughts are so irrational. What the heck is that all about. Then I just let it go. I don’t need any stressful thoughts to complicate my already complicated life.

And because I’m so tired even after a night in bed, the thought of having to get myself dressed and looking presentable in the morning wears me out. If it’s not messy hair, pajama pants and t-shirt doable, it’s too much work.

I appreciate when a friend asks me to do something, but then is ok if I end up declining their invite because my body is simply too exhausted to function, even if it ends up being a last minute change. No one should ever have to spend time defending how they feel and why.

The world is buzzing by at hyper speeds and it tries its best to force me to keep up with the pace it sets, but MS has given me a slower pace that requires pitstops and multiple times of rest. Most of the buzzing about that the world wants me to do isn’t really important anyway.

I choose to hold onto the things that really matter in life like great friends, savory coffee and extra time to stay in bed. My bed is my friend and keeps me company even in the middles of the day when I need fluffy pillows and moments of quiet. I like friends like that.

Why Does Your Brain Ask Weird Questions When You Can’t Sleep?

My body has limitations that aren’t negotiable

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Stating my reality is not an excuse. When I tell you I can’t do something or I’m in pain, it’s not an excuse. It’s not a matter of not being positive enough or not trying hard enough. It’s my reality. It’s the truth.

It’s important to understand that being realistic does NOT mean giving up on your dreams. If there is something you really passionately want to do, but it would be challenging, you still may be able to do it if you plan and prepare appropriately.

Consider each activity more by how much you want to do it, or what you are willing to lose or miss out on if you do it, rather than trying to do everything you used to do. You know your body’s limits, and what is or isn’t worth the fight.

Be conservative in your planning at first so you can learn what your limitations and capabilities really are. Be aware that they can change often but you do have every right to push your limits and try to do the things that are important to you. The key part is to figure out what that looks like for you. Sometimes what you think will be super easy can actually be some of the most difficult things you do.

I have gone from being the person who organizes events to someone who is unlikely to have the cognitive space to complete the plans and worse, may pull out at the last minute or even won’t be able to join in on the celebration. Sometimes I am not even strong enough to take a shower in order to make myself presentable. I typically manage a quick text, before sinking back into exhaustion. Holiday times are the worst experiences for me.

An observation I have made is that some of my friends and family have taken this personally and assume that my change in behavior is a reflection of my feelings for them, rather than a symptom of MS which can change from day to day.

I can be so quiet about my struggle that people around me can forget they I’m hurting. This doesn’t mean I’m not having difficulties, it simply means I don’t want to bother them and keep saying the same thing over and over again like a broken record. I just wish my struggle could be better understood by those around me and that my worth wasn’t defined by what I can or can’t do.

This kind of disconnect can cause loneliness to set in which is tough to get through. The magic of human connection, just being seen and heard through the MS struggle, can be a great relief to the loneliness. A real conversation with someone who has taken time to ask and then genuinely listen can be worth more than all the plans and parties combined.

Stay strong for who you are — a person deserving of love. You have so much to offer the world just by being your authentic self. Don’t let self-doubt hold you back from living a meaningful life and embracing moments of joy and connection with others.

I want you to know that you are not a burden. Don’t let those negative thoughts define you. Your challenges or limitations do not make you any less worthy or valuable. There are people who see your strength and resilience in the face of difficulties and are encouraged by it. Focus on surrounding yourself with people who appreciate you for who you are, imperfections and all. Be the reason they feel less like a burden and more like a blessing.

I want you to know there is light ahead, even in your darkest moments. You can get through this. Stay strong and keep your head held high. Happier days are coming!

Something bizarre happened to me

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Sometimes bizarre things happen with multiple sclerosis just because it exists. After all, we live with a strange, unpredictable disease that seems to have a mind of its own. At times I do things so strange that blaming it on MS isn’t even fair. Out of everything that has happened I blame my right hand for it all. My right hand is more of a paperweight than something of use anyway. Between tremors and weakness, it’s useless.

Some of the really strange things that happen need to be discussed more often so more people are aware of the challenges we face.  The strangest symptoms I’ve dealt with include:

  • Feeling as if an internal earthquake is taking place inside my body.
  • Experiencing ringing in my ears that sometimes is louder than a crowd at a ball game.
  • Feeling as if water is dripping on me when I’m no where near a faucet.
  • The unrelenting crushing feeling of the MS hug which is more like a tight girdle wrapped around the rib cage or a boa constrictor that won’t let go.
  • Feeling as if food is stuck in my throat when I haven’t eaten anything.
  • Involuntary movements of my body like me accidentally kicking the doctor.
  • Abnormal sensations on my skin such as burning, pins and needles, and even itching that nothing seems to be able to alleviate.
  • Feeling an electrical shock sensation through my arms and legs when I tilt my neck downward.
  • Feelings of dizziness and being off-balance which accompanies nausea.
  • Experiencing emotional incontinence which brings on uncontrollable laughter or tears.
  • Dealing with 3-D illusions like when an object is moving straight towards me but it appears to be swerving and shifting in its path.

I have also noticed a strange phenomenon since having MS. I don’t have a clue if it’s actually related to MS in any way as I’ve never heard it talked about, but I thought I would mention it so others who are dealing with the same things don’t think they are going crazy.

When I get something as simple as a pimple on my face (it’s not just for teenagers, you know), it will take a few months to fully heal instead of days as in times past. I’ve noticed the same thing happens with cuts too. I cut my finger in the kitchen and after a month it has healed aside for a slightly puffiness. I’m just glad my hand is numb and I can’t feel any pain that is going on inside. It’s healing at its own slow pace. Bizarrely slow, I have to say.

It could be due to some of the medications I take. I take things for muscle spasms, pain, dizziness, help with sleeping, and temors. A daily cocktail along with a slew of supplements and vitamins. It’s crazy because before MS I didn’t even take aspirin or cold medicine, now I have a rainbow collection of pills that would put a package of Skittles to shame.

When I was first diagnosed with MS I was taking a med called Rebif. I had to give myself inter-muscular shots 3 times a week, similar to those taking Copaxone. Those shots would bruise me so bad that over time I looked like I was being abused. I would have bruises on my thighs, arms and belly and they would take forever to heal. But the med would end up making me feel worse than MS actually did. I was medicating myself for the side effects of the medication. Such a vicious cycle that I’m glad ended when I stopped taking it. I would rather let MS progress naturally than feel miserable trying to medicate for a hopeful slower progression of MS.

Keeping a healthy diet helps to manage some issues, but it won’t rid the body of everything MS. I’m truly overjoyed for those that are able to fully manage MS by the things they eat and the supplements they take, but it’s important for people to understand that not everybody has such great results. Each of us is unique with our own cellular makeup and our own responses to diet and medications.

If you face slow wound healing, know that you aren’t alone. I’m sitting here with a puffy finger and a pimple on my chin to prove it happens.

It’s necessary for a person on a journey with MS to be able to recognize why coping with their illness is difficult. Knowing how crazy MS can be can help ease the burden, even if only for a little while. You got this.

Today I choose to focus on the positive

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I woke up early this morning… a usual for me. I do good if I get 4 hours of sleep each night. Between pain management and muscle spasms, I end up tossing and turning more than actually sleeping.

This morning I was feeling a bit down so I decided I would get dressed and head over to the local coffee shop. It always brightens my morning sitting in the shop listening to the hustle and bustle of the workers making drinks and serving people. Between the hissing and spewing of the machines, the wonderful smells of fresh roasted coffee beans, the chatter of the customers, and the rustling of chairs across the floor, it is oddly a great way to begin my day.

When you sit in public like this, you get the chance to listen in on all kinds of conversations. It’s not eaves dropping. When someone is talking loudly, you have all rights to listen in… besides, it’s not like you have any other options.

So far this morning, most of the conversations I have heard have been negatively focused. I have heard about a tyrant boss, a neighbors incessantly barking dog, many political woes, and relationship problems. Have you noticed the world has a negative slant on just about everything? Turn on the news if you don’t believe me. Almost all of it is bad.

In a world where violence, injustice, and despair seem to be everywhere, it becomes easier to expect bad outcomes rather than good ones. Sadly we hear so much negative talk throughout our day, it’s no wonder we find ourselves following suit.

So today… today, I am choosing to find positive things to focus on and remain hopeful that better days are coming. For one, I woke up this morning. Yeah! That’s amazing already. Now add to that the barista at the coffee shop knows my name and had my drink ready for me when she saw me coming. That’s pretty awesome too if you ask me. So that’s already two wonderful things this morning that I can talk about.

Then there’s the fact that I get to see the sunrise since I got up so early, I get to meet new people, give away a smile to someone needing a bit of cheeriness to begin their day, and of course enjoy a hot cup of coffee to begin mine. All those things make my heart happy.

I could focus on the vertigo and blurred vision I’m fighting through as I type this, the pain in my legs and feet that never seems to stop, and the tremor in my right hand that’s making it hard for me to type or even hold a cup of coffee, but what good will that do?

Here’s how you focus on the good…

1. Practice gratitude
Identify things to be grateful for.

2. See the good in others
Seeking the good in others broadens your perspective to understand those who may not necessarily share the same views or values.

3. Surround yourself with positive people
Studies find that those who surround themselves with happy people are more likely to be happy themselves.

4. Seek out good news and stories
Consuming uplifting content is a good antidote to all the negative events happening around you or directly to you.

5. Recognize your good qualities
Commend yourself for your good deeds and acts of kindness no matter how small.

6. Live in the present
Our dwelling on past painful experiences and our anxieties about the future often get in the way of focusing on living in the present.

There’s always something good to find in your day, you just have to choose to find it. Instead of pointing out all the bad things happening around you, find something that shines a light through the darkness. Even with the chaos that surrounds you there is something good in your day today. What are the good things surrounding you?

 

I always say MS is a disease that keeps on taking

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Have you ever wondered if someone else has the same outlook as you regarding multiple sclerosis and all the troubles it brings to your life? Does someone think the same thoughts as you? Or maybe you look at your life and decide you’re all alone in your opinions about life with MS. Voicing a thought that’s contrary to popular opinion can be funny at its best, or terrifying and nerve-wracking at its worst. But having an unpopular opinion that goes against the status quo may not be as uncommon as you think. You just may be the only one brave enough to say it.

Many people don’t like talking about how much a person’s life changes when a diagnosis of MS comes along or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Just because people aren’t talking about it or choose to hide their struggle, doesn’t mean it’s not real.

Suicide rates among those living with MS are twice as high as those of the general population. The reason? Because our symptoms continually progress (meaning they keep getting worse) making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and a lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day life, and as time passes they seem to only worsen.

It’s kind of like watching a grape slowly withering on the vine even though it’s given plenty of water, sunshine and care. We experience changes in our body and feel them with such intensity that it’s hard to even put our disease progression into words. We can actually feel the numbness, pain and difficulties creeping up our legs, arms and entire body to where one day it may just be our big toe that we can’t feel and the next it’s our entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up emotions. All we want is to fit in, get our life back, and live that carefree life that MS stole from us. I always say MS is the disease that keeps on taking.

Who wouldn’t get depressed knowing that their body was destructing from the inside, out? Sometimes it’s easy to face the struggle, but many days it’s a battle between sanity and trying to hold onto our dreams. It’s when those dreams begin to fade and all we have left is the pain and confusion, that’s when the tears begin to flow and depression rears its ugly head.

You see our smiles, hear our laughter and admire our strength, but in actuality we know those things are only hiding the pain… both the emotional and physical pain.

If you are having a wonderful day, please don’t criticize someone who isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to people for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to talk with a counselor or psychologist. There’s nothing wrong with needing help with your inner struggle. We all have them. It’s just sometimes easier to face the pain with someone else’s help than trying to do it all alone.

Don’t give in to this relentless disease. We are all here for you, standing with you, reaching out in our own kind of way to help. We may not be perfect, life may be a mess, but you are loved, cherished, needed and oh so wonderful.

Life may not have turned out the way you expected, but you have a story to share that can help countless of people cope with the unplanned and unexpected. Talk about what’s going on. Help others see that the struggle is real. It’s time to let go of holding on so tightly to a life that once was. Let go and come dance with me.
________

If you know someone who’s depressed, please resolve never to ask them why. Depression isn’t a straightforward response to a bad situation; depression just is, like the weather. Try to understand the blackness, lethargy, hopelessness, and loneliness they’re going through. Be there for them when they come through the other side. It’s hard to be a friend to someone who’s depressed, but it is one of the kindest, noblest, and best things you will ever do. ― Stephen Fry