as many of you know, i’m in a wheelchair. i have a genetic neuromuscular disease called spinal muscular atrophy. it’s an incurable disease that causes progressive muscle deterioration and weakness, eventually leading to death. as you can imagine, i’ve spent a great deal of my life struggling to come to terms with this disease — a struggle i will never overcome.

despite this horrible disease, i’m very thankful for everything i have. i have a good paying job, a wonderful family, a girlfriend i love to death, a great group of friends, a roof over my head, food in my belly, and all the things anyone could ever ask for. i’m not only thankful, but most of the time i’m extremely happy. life’s too short not to be, especially for me. so i do everything i can to see the positive in things, to laugh as much as possible, and get the most out of every moment.

but no matter how hard i try to be upbeat and optimistic, sometimes it’s impossible. after all, in addition to the difficulties and stresses of everyday life, i’m also fighting a disease that is literally sucking the life out of me. that’s tough to deal with and occasionally, i can’t overcome the emotions that come with it.

it used to be that i would desperately try to “fix” myself during these dark moments. i would do everything i could to pull myself out of a somber period because i felt it was wrong for me to feel depressed or angry or anxious… and i had to correct it immediately.

but lately i’ve taken a new approach. i’ve given myself permission to feel what i’m feeling and be ok with it. as long as i’m not hurting myself or others, it’s all right to be sad or angry or anxious. it’s even ok to shut myself off from the rest of the world.

i’ve found this tactic to much more helpful than trying to “fix” myself. if nothing else, it relieves the anxiety of “why aren’t you feeling better? make yourself feel better.” it helps me cope with the daily struggle of a fatal disease that is making me weaker by the minute. it helps me get back to being happy when i’m ready to get back to being happy. it helps me get through tough times without putting undue stress on myself.

i’m posting this note mostly for myself, as a form of cathartic relief from a difficult 72 hours of darkness inside my mind. but if this post can help someone else weather a storm in their life and give themself permission to feel what their feeling, then that’d be great too.

in closing, let me say that life is a beautiful thing. i hope everyone can enjoy it as much as possible. but i also hope you’ll allow yourself to live in the moment and be yourself and feel what you’re feeling. we all deserve that right.