This is the first letter in a two-part series looking back on life in my 20s. Today’s post is a hypothetical letter written from my 23-year old self to my present-day self. In November 2009, at age 23, I went to a doctor’s appointment that would change the course of my life. This letter captures my thoughts and emotions right after I left.

To learn more about this series, click here. 

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Dear Chris,

I’m desperate. I need answers, and I need them now.

I’m sitting here on a bench in the sky lobby at Beth Israel Hospital. I just came out of my first neurology appointment, and it was traumatizing.

Words are hard to come by at the moment. I’m dazed. My body feels heavy, almost detached. I’ve been staring right into the sun reflecting through the window and I don’t even care.

So many thoughts are running through my head, so many emotions. Above all, I’m afraid. My future has been turned on its head, and I don’t know which side is up.

The doctor confirmed that I do indeed have dysferlinopathy, which matches the diagnosis I was given in high school. That part isn’t shocking – that’s why I scheduled the appointment. Unfortunately, I learned for the first time today what that diagnosis actually means for my future.

It turns out, the weakness I felt in my legs while running wasn’t because I was out of shape, it’s because I’m getting weaker. Now. At age 23.

I had a sense it was related to my disease. I haven’t felt right for a while, and I’ve noticed that I don’t gain strength at the gym anymore. I just went for a run the other day and could only run for a few minutes before fatiguing.

I don’t know what I expected the doctor to say, but I guess I felt that deep down it was a condition I could manage somehow, or that if I rested and did low-impact exercise, the strength would come back. I thought maybe I was stressed out or overdoing it, even though I am as active as the average person. It never occurred to me the strength, once it left, was gone forever. I never expected that I would weaken this quickly.

I told him that I thought it was something that would happen to me later in life, at a slower rate, and that it would be a minor nuisance more than anything. He shook his head and told me the symptoms are already manifesting. Already manifesting? How is this possible?

I’m sure you remember this day well – I know I’m not telling you anything you don’t already know. But please bear with me. I just don’t have the benefit of hindsight like you do – I’m living it for the first time right now. It sure feels like this is a turning point in life. Is it? Is there no going back to the way things were after today?

He said I might not be able to walk by the time I’m 30, that many people are not ambulatory by that age. He tried to reassure me that since there are so few patients, the variability in the disease progression is great, so nothing is set in stone. But what’s the difference if it doesn’t happen by 30? It’s going to happen, probably within the next ten years.

Well, future Chris, am I still walking at 30?

I’ll be honest, I don’t see how I can go back to living life the same way with this knowledge. I feel like the storm clouds are gathering in the distance, and life is going to become increasingly difficult. I can feel the anxiety build within me. I probably am overreacting, but I’m not thinking rationally at the moment. I’m tired, I’m stressed, and this is a lot to process mentally.

Speaking of being rational, how the hell could I have been so naïve? I’m someone who always tries to be objective and collect the facts. How could I have gone through college without bothering to research what this disease will do to me? I should have known. I feel irresponsible, like I let myself down, wholly unprepared for what I would hear today.

If I knew, I would have studied abroad. I would have traveled. I would have gone on Spring Break. I would have prioritized my life differently. I would have done so many things had I not been so blissfully unaware and ignorant. I’m an idiot.

On the other hand, thank God I was blissfully ignorant. For four years I didn’t have a care in the world about this disease. What if I had been aware of what was to come? Would I have had the same experience? I say that I would have traveled and done all these fun things, but is that true? Maybe I would have been too depressed to go outside.

The truth is, I’ll never know. The facts are the facts, and I’ll debate the pros and cons of knowing earlier another time. Right now, I’m just so overwhelmingly….devastated. I know it’s not a death sentence, thank God, but life is not going to be the same. The more I think it through the more I grasp the enormity of it all.

There was one moment today that was especially difficult. Towards the end of the appointment, as I sat there on the table processing the doctor’s words, I found myself stalling, trying to avoid asking the one question I knew I had to ask, but already knew the answer to. Eventually I mustered up the courage.

Are there any treatments?

He leaned back in the chair before answering, which I knew was a bad sign. He admitted it was going to get worse, that I could eventually end up in a wheelchair, but unfortunately, there’s nothing they can do to stop it. He cited some trial in Germany or something, but he said it was ineffective. Instead, he stressed the importance of controlling the disease, to slow the progression. Eat well, get plenty of rest, don’t exercise too hard, don’t drink too much, that sort of thing.

He probably said more after that, but I had spaced out by that point. He ended by recommending that I go see a physical therapist in order to maintain my strength, but seriously, what’s the point? No matter what I do, it’s going to get worse. Even if I delay the symptoms, they are eventually going to manifest.

As I sit on this bench, I can’t help but wonder what life will be like at 30. I need that answer. I need to know what to expect in the next few years. I am done with the blissful ignorance. I have so many questions, questions that I am afraid to ask but I have no choice. I’m trying to suppress my thoughts, but my subconscious is tormenting me.

Please, be honest. Will I be able to overcome this?

Will I be able to plan for my future?

Will I be able to buy a house?

Will I find a girlfriend who will accept me despite my disability?

Will I look at myself differently, or be treated differently by society?

Am I going to fall and break something?

Will I be depressed?

Will I still be walking?

And I hate to ask this, but it’s really eating me up inside – is this life worth it? Will I be happy?

On second thought, I don’t know if I can handle the answers to these questions. I’m clearly scatterbrained right now, but I’m so scared. So much in my life is going to change if I’m getting weaker. There is so much I haven’t done, so many things I’ve taken for granted that I know I’m going to lose the ability to do. I am already low on self-esteem and confidence to begin with. To not be able to walk, or lift my arms to feed myself – this seems like it is going to be too much to bear.

Oh what am I saying, I need to know! Please, don’t hold anything back. Tell me what is going to happen so I can prepare to the best of my ability. So I can enjoy the mobility I have now before it’s taken from me. I need a map, a compass, anything to get me through this storm that’s coming.

Above all, I need hope.

Sincerely,

Chris, age 23

November 20, 2009