Navigating Cerebral Palsy, Rheumatoid Arthritis, Disability, and Depression: Grace Grantham

Three years ago, Grace Grantham posted something very brave on Facebook – a list of the ailments she deals with daily and the ripple effects they cause. It was no short grocery list. It was dauntingly long. I haven’t been able to find it since, but when I wrote a post soliciting people’s candor in talking about the hardships they deal with, Grace immediately volunteered.

Grace kindly agreed to answer some questions, but to begin with, she has given me permission to post some of the messages she has put online over the years…

13 years ago:

One thing I’ve always hated about just having CP is I miss out on a lot of fun trips I see my friends and cousins take. I’d never change having CP but it’s lonely. The most difficult is this RA. CP was a walk in the park. The arthritis is a cruel game.

12 years ago:

About me? Well, I have cerebral palsy and rheumatoid arthritis, so life for me is a roller coaster of emotions. In order to be in my life you have to understand I have ups and downs because of the cerebral palsy. CP is a brain injury caused from lack of oxgen during the birthing. Whenever people hear “brain injury” they have this one idea that doesn’t fit everyone. I have some learning difficulties because of cp – not everyone with cp or any brain injury has the luxury of having a learning disability – just the very awesome. We’re too smart for the “normal people” – LOL! I’m not dumb. Actually when I was 17, I had an IQ test and I ranged the age 25-30. I like funny-loving souls. I am a disability/human-rights activist.

11 years ago:

Anyone who has known me my whole life or some of it knows I have battled depression. Battle because that’s what it is. I have come a very long way from how deep I can get. I know myself well enough where I knew a week ago that I was getting that old feeling. I do take meds for depression – as a human advocate there is nothing wrong with people knowing that. In fact, you can ALL be relieved – LMAO! I have also realized while I was starting this oh-so-lovely downhill who was capable of helping me and who just was not (helping me meaning not being so hard on me). The difficult part with medication (all meds) is they can work for a long time, and I was very lucky mine did, then things change in a blink of an eye. This is not for all to write “sorrys” to me or anything sympathetic. This is to explain me! Yesterday I deleted my blog I’ve had for almost 5 years. I found people in the disabled community not helpful/supportive, although I’ve always had that issue. I just dont have a “slot” I fit into. Doctors and students loved my blog around the world and I am glad I helped them. The more debilitating the RA gets, the less I have cared for the blog and many other things. I go through moments where I just cry (“What the friggin’ hell?!”). I am really hoping my docs can agree on a new med that’s also helpful with the pain of RA.

4 years ago:

Hiding everything from someone else, pretending to be better than you are – it just doesn’t work anymore. No matter how strong you want to be. Then the moment comes when they tell you what you have… You have mixed feelings: you finally know what you have, but how do you deal with it? Lack of encouragement, wanting to lie down, taking medication frequently, a whole pharmacy on top of the nightstand. Then, the daily responses, “Why did you get so fat?”, “Hey, that hair of yours is awful and it falls out!”, “What happened to you??” This is all true and that’s why I’m sharing it! Silent and invisible diseases do exist. When you have an invisible disease it is difficult to fight with ignorant people. They don’t get it until it happens to them. Life takes a lot of turns!!! Tired of being asked: “Did you go to the doctor?”, “Have you tried this?”, “Have you tried that?” Yes! I tried and still try everything!!! Doctors say this disease is forever. That I will not heal. However, I am not giving up, but I want to make others realize:

• A nap will not cure me but it will help me
• I am not lazy – I take medication and it sometimes makes me sleepy
• I am not angry but sometimes cranky with pain
• I struggle daily with pain, mobility problems, fatigue, and the criticism of my environment

Most frustratingly, people look at me and say, “It can’t be that bad; you look good.” Despite the fact that my body is experiencing excruciating pain everywhere, of course I look good, I always try to look good, it is an “invisible” disease.

I apologize if I don’t go to events I would like to attend, or get tired and want to leave early. One day you will understand my daily struggles. This disease affects me physically, mentally, and emotionally. Because rare autoimmune diseases cannot be seen, but we feel them. And they are there… Silent attack but extra painful.

3 years ago:

It’s come to my attention some people feel I overreact with my physical health. Here, I just had my appointment with my rheumatologist. This is the list. Now, who’s overreacting?!

• Cerebral palsy
• Rheumatoid arthritis
• Osteoarthrosis, generalized, involving multiple sites
• Right calf pain
• Osteopenia of neck of right femur
• Abnormal involuntary movement
• Arthritis of foot
• Blurring of visual image
• Foot pain
• Genetic torsion dystonia
• Immature cataract
• Right knee avulsion fracture
• Psoriasis

(And this isn’t the long list I was referring to at the beginning – this is the concise list.)

2 years ago:

Today is the day I decided no more walking. The older I get, I’m more unsteady. Living with cerebral palsy from an accident during birth, I did great up until my late 20s, but it was manageable with a walker and wheelchair. The last couple months, walking has been a pain in the ass. Today I lost my balance and banged the back of my head on the edge of the heater vent. This is when I decided no more walking and I’ll have way more energy to do things. This would be for in the house or just going out with Jim and traveling. This chair weighs only 40 pounds and it folds up for the car. It isn’t cheap and Medicaid and Medicare don’t cover it, but it’s a necessity. When I was younger I thought I’d always beat the odds. Unfortunately in life you never know what will happen. Also having rheumatoid arthritis and osteopenia, my bones are starting to break down. I already need a knee operation and in time I’m sure other things will need tending to. I’m not sad or asking for pity, I’m just telling you what’s up.

2 years ago:

I should shower today. I should shave my legs. I should have the ability to clean my house so Jim comes home and does nothing. I should have the energy and mobility to make a great meal. I just can’t do it today. I can’t move. So many things I want and wish I could do just for today. Maybe tomorrow I’ll wake up with the feeling of I can rather than should. Have a good day.

I am grateful for Grace’s transparency in answering my questions:

What happened specifically that caused these issues that you write about?

I was born in Hollywood, California. My dad was a drummer and vocalist in a band there. He was a founding member of the 70s and 80s band, POCO. When my mom went to her last checkup before her due date, I was in perfect position for a smooth delivery. At the last minute, I decided to turn. But that wasn’t the only problem. The doctor never showed!! A golf game was way more important. Another doctor saw my mom and they kicked my father out of the room. I was breech and not breathing. My throat was clogged. The doctor put his mouth over mine and got everything out. The minute I got air, I had a grand mal seizure. They gave my parents every bit of grim news you could imagine. They even told my parents to put me in an institution, that I’d be a vegetable.

What’s the most difficult thing in your life?

The most difficult thing has been losing my ability to walk. I walked without assistance until I was 25. We aren’t exactly sure what happened, but I began not being able to walk or run. I was a runner in sports – I ran the 60 meter and 100 meter. I felt so alive running. I have lots of ribbons that I’ve won. Now sadly I go through periods of hating feeling trapped.

Where does your strength come from?

My family. My inner self. From a young age I was tought to never give up and to not feel sorry for myself. It took years to become an outspoken, in-your-face person, LOL!

I imagine these issues have invariably forced you to have other strong qualities you may not have otherwise had. What are those additional strengths?

I love the arts. My grandmother was a painter, her mother was a poet, and for a long time I wrote poetry. One day it went away. It was very odd. Then I fell in love with photography and how one photo of anything can move people.

What are some things readers can learn from your particular life experience?

When you see someone disabled, please don’t pity us. We’re here for a reason, and that’s to teach you about acceptance.

What question should I ask but might not know to ask?

Rather than asking, “What’s your disability?” or “How come you’re in a chair?”, simply engage in a conversation, form a relationship, and eventually we will say what’s going on or why we do things the way we do.

Also, I have cerebral palsy that’s worsening over time. I’m also more spastic than I used to be.

I inherited rheumatoid arthritis on my grandfather’s side. With RA you have to have bloodwork every three months. At first I took methotrexate, which is chemo. I lost a lot of my hair. Now I’m on a pill I take once a day and (knock on wood) things are good. Once in a great while my hands and back really hurt.

Thank you for speaking out, Grace. This culture lures us to want for more, to downplay what we already have, and to criticize what we are made to feel are our faults or shortcomings. I hope these experiences remind all of us to be grateful for what we have in this life rather than what we lack.

May sharing hardships lighten our burdens and multiply friendships.

And now for a lovely slide show of photos from Grace’s life…

Photos shared with Grace’s permission