Living with the Disabled

I am a TAP and I live with a person who has a disability. This person is my mother. This disability is multiple sclerosis (MS).

Looking at my mom you can't tell that she is disabled. She can walk, talk, laugh, and play just like a TAP, but there are times when her MS relapses and that's when her disability shows.

Now don't get me wrong my mom isn't an "embodiment of an incurable degenerative disease" that attacks the nervous system, she's just my mom (Mairs 14). She cooks for me, helps me with my homework, and has the occasional shearing pain that shoots through her body, but then again who doesn't?

1/31/15

It’s 10:30am and I’ve just gotten up to get ready to go to work. I go to check on my mom and she informs me that her trigeminal neuralgia is flaring up and she can’t take her gabapentin because she is pregnant. Great. Now my mom is going to be in pain all day. Should I call off work or shouldn’t I? Thirty minutes later she’s feeling better and is actually talking. It doesn’t feel like someone is stabbing her in the face with a knife and dragging it along the left side of her jaw. She’ll be alright. I only work for four hours.

“Hi welcome to Wendy’s! What can I get for you today?” I wonder how mom’s doing.

“Would you like crackers and hot sauce for your chili?” Should I text her? No maybe I should call.

“The Jr. cheeseburger comes with ketchup, pickles, onion, and mustard.” I only have an hour left until I go home, then I can go be with mom.

It’s 4:01pm and my dad has picked me up from work.

“I had to take your mom to the hospital. The pains in her face were really bad. She was crying and everything. I need you to stay home with your brother, he doesn’t need to see your mother like that.”

Everything freezes. My heart stops. I can’t breathe. I knew I should’ve stayed home today! It’s all my fault! Why didn’t I check on her more often at work? I should be at the hospital with her! No you need to stay strong for your little brother. I just need to pray.

It’s 6:06pm and I’m watching T.V.  with my little brother.

“I’m worried about mommy. When will she be coming home?”

“She’ll be home shortly Marlon. She just needs to get some medicine from the doctor first.”

It’s 7:02pm and mom is home. She’s still clutching her face and crying. I look at dad.

“The doctor couldn’t give her anything for the pain because she’s pregnant. She’s gonna have to ride this one out.”

She doesn’t want to be touched. I can’t do anything to get rid of her pain. I hate feeling useless.

“AJ go get a hot rag and give it to me so I can put it on my face.”

I run to wet a facecloth, burning myself multiple times in the process. I run back and give it to her.

It’s like this for the rest of the night.

2/1/15

It’s 10:30am and I’ve just gotten up to get ready to go to work. I go to check on my mom and she informs me that she feels much better. She’s smiling this morning. Thank goodness she is feeling better.

I get ready for work. I hope she feels fine the rest of the day. What if if comes back? What if she has to go to the hospital again? Should I call off work just in case?

It’s 11:50am and she’s still feeling fine. I guess I can go to work today.

“Hi welcome to Wendy’s! What can I get for you today?” I wonder how mom’s doing.

“I’m sorry we only carry Coke products.” Should I text her? No maybe I should call.

BBBBUUZZZZZZZZ!! It’s my phone. It’s a text from mom. Oh no she’s in the hospital again!

The text reads:

Hi honey! I hope your having a great day at work. Don’t worry I’m doing fine. I’ll see you when you get home. I love you! <3

It’s 7:15pm and I just got home. I go to check on mom. She’s tickling my little brother and laughing with the biggest smile on her face.

I’m happy because I know she’s going to be all right. 

It’s reassuring to know that my mom’s MS only “complicates but does not ruin [her] human existence” (Mairs 15).

My mom, little brother, and I over my grandparent's house during Christmas 2012.