Tuesday, June 28, 2016

Don't DIS me!

I am disabled. DIS-abled. It is probably not politically correct to call a person disabled. I think the preferred term might be "person with a disability." I have never been one to get easily offended or get caught up in semantics. I am DIS-abled. What does that mean, you ask? Well, let me try to explain my experience.

If you are a lawyer and get DIS-barred, you can no longer practice law.
If you show up to a party, and then DIS-appear, you are no longer at the party.
I was abled. Now I am DIS-abled. I can no longer do a lot of the things we used to do. If you have been following my journey, you know that I was very active and fiercely independent. I have had some health issues that caused pain and slowed me down since 1998, but it wasn't until they removed the nerve tumor in September 2009, and I lost partial use of my left leg, that I truly felt disabled.

Now you have probably all seen the Facebook posts of me climbing rock walls one-legged, or kayaking, or riding my adaptive trike, or finishing the Tough Mudder. I have pushed myself. I have tried "to adapt, improvise and overcome" as they say. What you can't see is the inner struggle. That fiercely independent woman who stills screams at me to get up and go, but quickly realizes her body hates her and isn't willing to move. You don't see the pain that comes after I push myself. Those closest to me are familiar with the constant cycle of me doing too much, and then needing days to recover.

Coming to grips with this new neurological disease, that is slowly causing me to be more disabled, is a slow and painful journey. I walk with a cane for balance now, although I should probably use a walker to be safer, and can't do long walks at all anymore. I am in almost constant pain. I don't sleep well because of the nerve pain burning down my legs, and there is the muscle cramps and twitching that contort my legs and feet into very painful positions and won't let go. This is all difficult. Harder than I imagined, and just when I think I am making progress in accepting this new reality, life smacks me in the face and reminds me how hard it all is; how much I am missing out on.

My recent struggle to push myself, or Chad would call it my stubbornness, keeps me going to the grocery store each week. I can no longer push a cart and walk around, so I have to ride in one of the motorized carts. I can only go to places now that offer the perk of a motorized carts to their customers. Without this feature, I would be unable to go shopping at all alone. Let me give you a little insight into the world of grocery shopping as I have come to see it. When I was fully able-bodied, the store was a place to go and get through as quickly as possible. There is a general pattern of traffic flow. People zip in and out and around corners, with an occasional "excuse me" as they reach for something. I know there are always a few shoppers that seem oblivious to their surroundings, either because they are on the phone, dealing with kids running around, or sometimes just because they have the ability to be in their own little world and not notice they are blocking an entire aisle, but basically the system works.

After the 2009 surgery, and the accompanying full length leg brace, shopping changed for me. I could no longer expect to get in and out of the store quickly, not because I didn't want to or wasn't physically capable of walking fairly quickly, but because people seem to want to understand me. I no longer fit their idea of a "normal" person, and I think they need to make sense of it, of me. It made for some strange and highly personal interactions with complete strangers. I couldn't get through a store without someone, and usually more than one person, asking what happened. Here is a variety of fairly common interactions:

  • "Did you have knee surgery?" Quickly followed by a "Me too" and a lengthy description of all their medical issues. I tried to be polite and listen, and actually met some older people who I am sure didn't have many other people to talk to. Occasionally, I would be able to pray with someone who was hurting.
  • "What happened to your leg?" Quickly followed by extremely personal questions about my health and medical record. "Have you seen this Dr.?" "Did you try this, that or the other -meds, diet, etc?" "Where was the tumor? Did it cause any other problems for you?" I think you get the idea. I tried to be polite and honest, but usually felt a bit like saying, "And any of this is your business why?"
  • Others simply inquired, "Where did you get that brace? I need one like that because my knee hurts. Does it help? Can I get the name of your doctor? Can I take a picture?" I usually tried to be polite, comply with their requests without telling them this brace will in NO WAY help their knee pain!
  • Last is the group that tended to yell out to me down an aisle, "Oh! I had (or someone I know had) that EXACT brace, so I know exactly what you are going through!" These were my personal "favorites" (please note the sarcasm, just because you or your Aunt Gertrude twisted their knee and wore a brace, or had knee replacement, you have NO idea what I am going through). I didn't always manage politeness in these situations, but tried to maintain composure despite being irritated and usually embarrassed as the 6 other people in the aisle heard the entire exchange and are now gawking at me.......and sometimes their children would just come stare and touch my leg.

If you are still reading, stay with me, this is where it gets good!

So, now I find myself in the situation where a motorized cart helps me be independent and shop alone. First off, let me clarify, it is NOT easy to shop from one of those. If I had a choice, I would definitely NOT use one. Have you ever been driving on a narrow road or bridge and found yourself holding your breath, or pulling in your arms as to make your car smaller? That is something I find myself doing in that cart. It is not easy to maneuver and you have to approach everything parallel to the cart and very close to you so you can reach. It makes shopping take a long time. It is a real endurance event for me between the waiting for people to leave room to fit in where I need to be, and the pain levels that build during the trip. Besides the pain in my neck and back from twisting, reaching, and looking up at everything, the hardest part is the people. Now, it seems that people no longer try to relate to me; no longer understand where I fit in their "normal" world, if I do at all. It seems people are irritated by me, or look right through me, or worse yet see me as some kind of circus freak to be avoided at all costs. Now when I shop I get one of a few basic reactions (only 1 person in all these shopping trips has stopped and asked if I needed help reaching something.):

  • The first group of shoppers tend to not see me at all. I mean, I THINK they see me. I thought we made eye contact even, but then they park their cart in front of me and block where I was headed. They let their kids keep playing in the middle of the aisle and seem to not hear my "excuse me." Others rush to get around me as I am seen only as an inconvenient slow down. Some days I think I may actually be invisible! I shop with a extra helping of patience now, and ample time.
  • The next group seem unsure what to do, so they dart away or grab their children and yank them, as if I were a monster too hideous to gaze upon. They don't know how to interact, so they avoid me. If given the chance, I'd love to interact and educate this group. 
  • The last group is the hardest, and also the one that is making me a little ruder at the store and fight for my territory in each aisle. This is the group whose judgmental glances start the second I climb into the motorized cart, or sometimes the moment  I park in a handicap spot as they try to determine if I truly belong there according to their definition of handicapped. They stare a little too long, and look a little too disgusted for me to excuse this all as me being paranoid. This group has some bold members (albeit passive aggressive) who mumble under their breathe, or speak to their toddler as they walk past making comments about people like me being slow, in the way, taking up too much space, etc. Yep, they say all that OUT LOUD so I can hear. Twice recently I have gone to a corner of the store and cried. 
It is SO much harder to shop from a chair, although I am grateful that the motorized carts are available for my use. I feel a good about still doing something by myself, I usually need rest and pain meds upon returning home. Having a disability can be very isolating, and things like the stories above, are partially why. Sometimes I want to give up; just let Chad do everything, and stay home where it is safe and comfortable, but....

Having a disability effects the whole family. As hard as this is for me, imagine how this has affected the rest of our family. Chad works 40+ hours a week, and then has to come home and do all the yard work (which I used to do), help with or do the grocery shopping for us, help with or do the house cleaning, all of which I used to do alone. You may be thinking that doesn't sound to bad, single people care for all those things by themselves, but he also has to add the job of care taker. Have you ever helped a love one who was ill, injured, or dying? It can be a heavy physical and emotional burden. I can't go and do all the things we used to do, all the things he would still love to do but doesn't want to always leave me alone. It is the sandpaper in our lives that God uses to help us die to ourselves, making us more and more Christ-like, and it hurts.

My kids are grown now, but even they have felt the sting with additional workloads, and missed opportunities over the years. My daughter, still living at home, gives me help and time in larger quantities than most her age I am sure, and at times I am sure it is more of a chore than a blessing. I know that God is sovereign in ALL things. We taught our kids from a fairly young age that whatever our family goes through, it was all filtered through the loving hands of God. My disability is OUR disability. It affects each of us differently, but with the same goal- our sanctification, our good, and God's glory.

Having just returned from JAF Family Retreat, where it is truly safe to be in pain, tired, different, or to just be yourself, without judgment, was fantastic! Some of the families there are impacted by profound disability requiring round-the-clock care. Just imagine 24/7 care, 365 days a year!! This is why the Joni and Friends ministry is so wonderful. First and foremost, it presents the gospel to families affected by disability. They help families connect to others that understand, in a judgement-free zone. They provide care and encouragement to children and adults who face the daily limitations of disability and for the caretakers in the family that are often isolated and overburdened.

So, besides ranting, why have I shared all this? Well, for starters my blog was started as a way to educate others about what suffering is, how it feels, and most importantly, to share the love of God in Christ Jesus- His goodness, loving-kindness, mercy and grace to sustain His people.

But, today I also share all this to ask for YOUR HELP!! September 3rd, in Oak Brook, IL, my family and many others will participate in the Joni and Friends Walk-N-Roll 5k to raise awareness and funds to help those families touched by disability. I am asking you all to get involved. Would you:

  1. Join my team (Tenacious Turtles) and come walk with us? Come meet some new people, learn more and be encouraged!
  2. Donate to support this wonderful ministry and help me meet our team goal of $1000?
  3. Share this info with your friends and family to help us meet our goal, even exceed it?
  4. Turn and walk away, forgetting you read this and decide it doesn't effect you?
My prayer is for us to have a record breaking donation year! I hope that sharing my story, my struggles, encourages you to get involved and make a difference. Reach out with a kind word, or an offer to help a family you know whose lives are affected by disability......you all know at least one, even if it is somebody in a motorized cart in a grocery store struggling to maintain a little independence and dignity.

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