Welcome back ladies and gentlemen to the newest instalment of my disability Q&A campaign series 🙂
Today’s interview is brought to you by a wonderfully strong and courageous woman called Debra, we met online and I can honestly say that not only is she such a lovely person, But her blog is filled with enthusiasm and knowledge!
Without me continuing to ramble on, I shall let Debra share her story with you…
Tell me about yourself:
My name is Debra Barrows and I am 34. I live in Coventry New York with my husband, stepson, rainbow baby and fur baby.
My Jobs include being a Household Manager, Ordained Minister, Party Planner and Blogger.
My hobbies include creating my own jewelry, crafting with my kids, making educational supplies for my kids, and decorating my home.
Now we know the basics, can we learn a bit more about you?
What is the medical reason you have a disability?
I was diagnosed with Heavy Medal Poisoning (Arsenic and Cyanide). I now deal with multiple health issues.
Insulin Pump dependent Diabetic
Fibromyalgia (chronic muscle pain)
Neuropathy (chronic nerve pain)
Spondylosis (lower spine is fused together)
Charcot Arthropathy (weakening of the bones in the foot)
Degenerative Connective Tissue Disease (loss of connective tissue around joints)
Degenerative Bone Disease (brittle bones)
Have you had your Visual impairment / disability from birth?
I was diagnosed in 2008.
Do you refer to yourself as a person with a disability? If not, why not?
In general, I do not. I try to overcome my issues on a daily basis. When others know that you are disabled they seem to over help. I find this annoying.
Do you tell others about your disability? Or do you prefer to keep that to yourself until you are comfortable with the person knowing?
I hold off telling until I have too. I have found that people who see me on a good day think that I am just trying to get sympathy. Meanwhile I hate being seen as disabled because I hate the look of pity from others.
Do you use any mobility AIDS such as a wheelchair or walking stick?
I have an Insulin pump, molded wrist splints for both hands, a walking brace for my left leg, and a leopard print cane.
If you could extinguish your disability, would you? – If not, please explain why.
Yes, YES, and YEEESSSS! Before the Heavy Metal Poisoning, I was very active. I worked on farms; I was a nurse (my dream job). I did not have constant pain; I could take a Tylenol for pain and go on with the day. Now I have multiple pain medications that do not touch the pain somedays and then be couch bound for days sometimes. I could eat anything now too much milk affects my blood sugar levels. I have to be careful what I do constantly because if I sit too hard I can break a bone. Yes I wish for my disabilities to be no more constantly!
How has your disability affected you?
Socially I do not go to crowded places to avoid being bumped into. The simplest of touches can send me into a spiral of pain. Sometimes the simplest of touches can also send me off balance and I have to struggle to get back to my feet.
Physically I am weakened. My bones can easily break from the slightest of pressure. My muscles have deteriorated in my legs. The constant varying levels of pain throughout my body makes the simplest of daily routine difficult.
Mentally I am not as sure of myself and who I am. I used to have a life path I was following it to a T. Now I constantly redefine what I can do daily. This wears on me. I get into slumps where I think I am no good for myself or my family. I have to recenter myself spiritually as to not have a depressive episode.
Do you think your disability has made you who you are today?
Yes. If I had not become disabled, I would never understand what others are dealing with. I have a real understanding for what pain is and how it can destroy lives. That is not something I could have ever understood from all my nursing books.
Is there a particular question you are asked often because of your disability? If so, please explain below.
Why do you have a handicap sticker, you look fine to me? Because there are days when I do not have to wear my braces or use my cane people assume I am fine and am trying to use the system. To be 100% honest I hate my handicap sticker!
However, there are days I would never make it into a store if I had to walk farther than the handicap parking space to get to the wheelchair inside.
What are the positives of having a disability? I understand others better.
What are the negatives of having a disability? Dealing with it all is very frustrating since I know what I used to be able to do.
What would you say is a difficulty for you being disabled?
Myself. I struggle to accept this is my life. Going from a strong healthy active 27 year old to waking up unable to move is hard to adjust to. I fought hard for the last 8 years to get to where I am. Actually, 6 years for the 2 years before my husband coming back into my life I just accepted what the doctors had to say and was ok with being wheelchair bound for the rest of my life. I had given up. My husband helped renew my faith in God and myself. Without him I would probably still be in that wheelchair.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?
In my home, I deal with struggles with simple things like washing my hair, so I cut it from waist length to shoulder length. I have handles in my shower. I have an electric jar opener. I have rugs so I do no slip. My furniture is arranged so there is always something to hang onto if I feel myself falling. These things help with the frustrations when I can’t do things for myself.
Outside my home, the things that frustrate me are people who think they know me and judge me. Stairs are horrible. Uneven ground and grass that is too tall trip me. Extreme changes in the weather affect my joints. I hate walking from my car on a hot day into an air-conditioned building. My joints stiffen and my fibromyalgia ticks in. I am the woman wearing a coat in 80-degree weather. People who bump into other people.
Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?
I find that organizing everything to a specific place helps. There are days I am stuck in bed. I know where to tell people to get my medications from, where the bill I need to call on is, what binder has the kids information, what closet on which shelf has the kids’ stuff for their appointment.
Do you use Assistive technology in your daily living?
I do not. Technology fails. I also live in a dead tower zone. I use a wall calendar and pocket calendar for everything. I put all appointments on both so I always have a calendar near me. Routine is my friend.
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?
Find supportive people. No medication, no assistive aide or gadget is going to help you through the mental workout you are going to endure. People who truly love you will be there to help you, love you and push you.
Any advice you’d like to give to a person with no disabilities?
Do not assume you understand. You have never felt what the person with their disability had felt. Every person is different, everybody reacts differently. Do Not assume to understand!
Did you seek out any specialist services / charities to help you and your family deal with your situation?
Where can people find you out in the world?
Thank you Debra for sharing your story! I’m in all of you, the courage and resilience you have is amazing! You prove that no matter what happens we always have fight left in us!
I hope that people reading this truly understands the meaning of an invisible disability, just because someone isn’t using an aid or crying out in pain, does not mean that they are not suffering and having a hard day with their disability.
You can find out so much more about Debra, her family and how she hopes to support others by visiting her fabulous blog!
Please don’t forget to follow her links, and why not share the love? Leave her a comment, we would both appreciate it!
If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
If you enjoyed this interview why not check out the others in the series so far?