Alan Hieber

I see my friends as an integral part of fueling the drive I have to face the tribulations of Duchenne muscular dystrophy (DMD). Honestly, I don’t know what I’d do without them. Their support is like a tether for my mind whenever it takes a spiral. 

Before I attended college, I was noticeably shy and didn’t interact much with my peers. I believe some of this stemmed from me subconsciously seeing myself as too different when compared to others my age. Despite this, I did sense there were a few people I could describe as good friends. A couple of them once put Styrofoam cups on the fence outside my former high school to mark when I turned 16. I keep in touch with them to this day.

In college, I wasn’t particularly socially active for the first 2 years. As I got deeper into the studies of my major, I saw a lot of the same people and ultimately made more dynamic relationships with them. The same happened when I met people through campus activities and sports writing.

Continue Reading

Read more about patient education and DMD

I made one friend through a recreation program geared toward people with disabilities. They are very understanding of what I deal with, which I’ve found isn’t always the case. Instead of me having to worry about some of the hurdles of going out in public on a regular basis, they’ve visited me at my house most times I’ve asked. 

There was also a collegiate athlete I met who has been a source of support for me in a few cases, and who is now a social worker in the mental health field, which makes them a little more equipped for this. Once I was feeling pretty under the weather with a cold and this, unfortunately, coincided with my power wheelchair malfunctioning. I was upset and texted this friend saying that I’d been crying lately. They said I deserved to be able to express my emotions in this way. It made me perk up a lot hearing this.

An average conversation for me can be difficult since it can expend my energy quickly. In March, we celebrated my father’s 60th birthday, and several family friends were there. The acoustics in our house are not great, so I’d have to repeat things and tire myself out further. A couple of close friends stayed right next to me for a while to make sure I could talk to them more efficiently. Little things like that can increase my confidence in myself to communicate with others despite a few roadblocks.

At the time of this writing, I’m about to commence the routine appointments I have with my team of specialists twice a year. As usual, I’m not very stoked about this. Before my last few forays to the hospital, I made a post on social media about this happening and welcomed any reassuring messages my friends could provide. The responses boosted my spirits for sure. One favorite of mine was being called a badass. 

Keeping with the social media theme, I’ve found a Facebook group for individuals who have neuromuscular diseases to be another important puzzle piece for coping with DMD. Through this information channel, I feel like I can discuss more sensitive topics pertaining to my disease than if I was posting publicly. There are nearly 2500 members, which means it’s more likely you’re going to get some kind of relevant feedback. As a result of this practice, I’ve made a few acquaintances who I can count on to give me advice I may need.

Recently, I became a member of a Facebook group heavily dedicated to discussing the challenges of bouts with chronic illnesses. I introduced myself in the first post I made and described how writing is therapeutic for me in coping with DMD. Within hours, I was flooded with thoughtful comments. This nourished my sometimes fragile self-worth.

The emergence of COVID was and continues to be an obvious hindrance to socializing with my friends in person. This 2-year period has made me feel isolated and regress to my shyer side a little. Now that it’s somewhat easier to stay a step ahead of the virus, I hope to mend my foundation of friends and recharge the support system I know is there.