Happy Birthday ADA!

On this date in 1990, the Americans with Disability Act was signed into federal law. I actually remember watching the evening news and seeing the video clip of the law being signed. I remember thinking that this was a good thing for handicapped people, but I certainly never felt vested in the legislation. After all, I wasn't disabled and it really didn't impact me.

Oh, the naivete of youth! Little did I know that I would be inducted into the disabled community and would come to rely upon the parameters of this law. The curb cuts, the ramps, even the handicapped parking spaces that I utilize are all the results of this legislation.

My disability didn't occur until this law was tested, enacted and enforced. Fortunately I have never had to struggle with access to public buildings. I came to take the accessibility options for granted and never really thought about how lucky I was to live in a society where they were required. My recent trip to the Bahamas was certainly enlightening!

One of the first things that caught my attention was the lack of accessibility offered at our resort. The sprawling resort had more staircases than I could count but no ramps. Luckily, I am able to maneuver the steps. If I had been confined to a wheelchair or had increased mobility issues, my access to the resort would have been substantially limited.

After noticing the lack of ramps, Scott and I began to note other differences in accessibility. The buffet was presented at chest level which meant that somebody in a wheelchair would not have been able to fill a plate. Of course, the flight of stairs that had to be traversed before getting to the restaurant was probably an ample barrier to keep the wheelchairs away. Other than being on the first floor, my "handicapped accessible room" afforded none of the common features I find in the hotel rooms in the US. There were no grab bars in the bathroom, the doorway was Bahama-sized (i.e. small) and the beds were especially tall. I am not sure why my room was classified as "accessible" because it didn't even account for my basic needs. It took my talking to three people to secure a shower bench, and even that was nothing more than a plastic beach chair.

When we stayed at a resort in Florida before our cruise, a plank board path led from the walkway to the ocean. Walking on the boards made it so much easier for me to get to the beach! In the Bahamas, the walkway ended at- you guessed it- a flight of steep stairs which led to the sand. 

Despite the lack of accommodations, we had a wonderful time on our trip. The purpose of this blog is not to diss the Bahamas but rather to show my appreciation for the Americans with Disability Act. Because of this legislation, I don't have to struggle with access. The Bahamas was beautiful to visit, but the disregard for the basic needs for handicapped individuals was surprising.

At first Scott and I were both shocked by the lack of ramps, elevators and other accommodations that I rely upon. We were at the resort for several days before we both had an epiphany and credited the ADA for the differences. If this legislation had not been passed 23 years ago, I am certain that my experiences as a disabled woman would be completely different. 

Society is not perfect and flaws still exist. There remains a lot of work that needs to be done before we have a completely inclusive infrastructure. That being acknowledged, I am thankful to be living in a country which attempts to provide access for all individuals. The Atlantis Resort in the Bahamas was beautiful, but it makes me sad that many of my amputee friends would find it more frustrating than fun.

Ready to Rumble...

It took me two days to work through the mountain of laundry that we accumulated during our vacation. I'm not positive but I'm fairly certain that my house became dirtier in our absence. Only after being home for a few days did I realize the dirt, cobwebs and clutter that had accumulated. Needless to say, after conquering the housework and laundry, I feel like I'm ready for another vacation!

I think that part of blame for my post vacation fatigue lies with my leg. The past few days have been uncomfortable, but I can't say that I've been in pain. Rather, I find myself acutely aware of each step I take. The bottom of my limb is sore and my knee feels weak as if it is going to buckle especially when I'm walking up stairs.

It didn't take long for me to problem solve my limb issue, but unfortunately the only thing that will help is time and rest. I spent the lion share of last week logging miles of walking on my water leg. Although it is great in the pool, it is certainly not designed for long distance ambulating. The socket is old (fabricated six years ago) and doesn't provide an ideal fit. I never bothered to get it changed because the buoyancy of the pool kept me from fully appreciating how uncomfortable the leg had become. It wasn't until I logged several miles a day trying to wear it that I realized the degree that my leg had become outdated.

The toes of the rubber foot have rotted away further compromising my gait. The ankle is fixed, and I have to lift from my hip in order to take a step. For some reason my knee slightly hyper extends with each step. Although it doesn't bother me during short distances, such as getting into and out of the pool, it became exhausting and painful after walking throughout the resort.

Right now my leg is angry with me for wearing an ill-fitting and broken leg. I know that it will feel better in a few days, but I admit that I'm frustrated. I know that these thoughts aren't productive, but at this moment I wish that I didn't have to deal with prosthetic issues.

Because I have no intention of avoiding water activities, I am starting the process for a new water leg. As if my aggravations with my current situation weren't great enough, I'm sure that my insurance adjustor Elsie will contribute to my frustrations. As far as I can tell, her real talent lies with wielding the "Denial" stamp. I guess we'll see who wins because I'm ready to fight.

Tips for Adjustment

One of the favorite aspects of my job lies with the people whom I meet. I enjoy meeting with individuals who have just become amputees, or those who are considering a delayed amputation, primarily because I lacked any one-on-one support when I started my journey. Remembering the isolation and fear that I felt continues to push me towards reaching out to offer support, insights and answers.

Although each individual is unique, some aspects seem to be universal. I find myself offering the same advice, so I thought it might be valuable to write about it. Below are my primary tips for adjusting to and living with limb loss.

Give yourself time. Everybody heals at a different rate. Just because somebody is up and using a prosthesis within six weeks does not mean that you are a failure or weak because your body hasn't recovered. The physical trauma that is sustained by the body when losing a limb is profound, so try to relax and remove the timeline from healing.

It is okay to grieve. I find that this needs to be stressed to those whom have undergone a delayed amputation. Just because you had some control over the timeline of your limb loss does not mean that the loss is less acute. It is okay to miss your limb; it was part of your body your entire life!

Give words to your emotions and find people to whom you can express them freely. When asked about my recovery, I  would always smile and say, "I'm doing okay." While this answer seemed to satisfy the question, in reality it was far from the truth. I was sad, angry, scared, in pain and feeling ugly. Worried that nobody would want to be around me if they knew that I wasn't nearly as well-adjusted as I seemed, I continued the charade. I spent the first 18 months of my amputee life feigning happiness and suffering silently.

Finally, I had to give myself permission to talk about my true experiences. Not feeling compelled to hide my true feelings to spare the discomfort of others has been liberating and supported my emotional recovery. If you don't find talking comfortable, try writing. In my opinion, the emotions will become toxic if you don't find a way to give them a voice.

Your body is different and it is normal to have body image issues after an amputation. The physical form that you've had for your entire life has been altered. It takes awhile to learn to adjust and to accept the changes. Although it might seem impossible, eventually living without your limb will feel normal.

Bad days are inevitable, and you are entitled to feel them. It is okay to visit the sadness and grief from time to time. I am a firm believer that we all have to visit those dark places in order to rally and come back stronger. I've been an amputee for a decade, yet I still experience those "I miss my leg" moments. I have learned to allow myself to wallow and feel sad, but I am also careful to pick myself up the next day and move forward. 

Keeping an open dialog with your prosthetist is paramount. Relying upon an ill-fitting socket can be painful and disabling. If you can't talk to your prosthetist or if you feel that you are not receiving quality care, it is your right to go somewhere else. The amputee is the consumer in the relationship. The prosthetist is not giving you a prosthesis; you are buying it and you deserve to be happy and comfortable.

Find a support system to help you transition and adjust. Having not only cheerleaders but also individuals who are able to provide first hand experience can be extremely beneficial. Solicit the input and experiences of others who have been living with limb loss.

Finally, it does get easier. I remember everything feeling laborious and exhausting. Nothing felt normal and I felt foreign in my own body. I was certain that I had made a huge mistake and was destined to live the remainder of my life in misery. One day during lunch I realized that I hadn't yet cursed my prosthesis. In that moment I realized that I was adjusting and that I was going to be okay.

It takes time and it isn't always easy, but life can be fabulous after limb loss. Eventually the limb loss will not define you but it will be relegated to a part of what makes you unique. Adjusting to a major life change is never easy, but know that you aren't alone and that there are legions of people who are willing to help.

Pancake Revolution

Robby is an extremely active child who prefers playing to watching television. He typically watches a few minutes of cartoons in the morning as he wakes up and select shows with his Daddy at night. Other than those times, he only sits and watches TV when he is sick. It's a good thing that he doesn't zone out in front of the television because he is a sucker for commercials!

I am amazed at how versed he has become in commercial jingles, tag lines and money back guarantees. We can't walk through the grocery store without his picking up a product and reenacting the spokesperson spiel. I am bombarded down the aisles with pleas to buy the latest miracle product he spies on the shelves.

Although he has a talent for pitching cleaning products, his true passion lies with infomercial products. He is easily swayed by the often frantic demonstrations and the money back guarantees. When I try to employ logic he only becomes more adamant in his sales pitch. "It works Momom. They showed it on TV. See, I told you it works. We neeeeeed this!"

For some unknown reason, his favorite product is the "perfect pancake pan." He has been mesmerized with this pan since he saw it advertised for the first time, and I am bombarded with pleas, justifications and begging every time we see it in the store. Despite the fact that I don't have a problem flipping pancakes, he is utterly convinced that my kitchen is deprived because I don't own one. 

A few days ago while Robby was playing with his Legos, I turned on Spongebob and told my little builder that I would be in the computer room if he needed me.  About five minutes later I heard him running down the hall before frantically pounding on the door. In a hurried voice he asked me if I had a major credit card. I thought it was an odd question, but needing to finish my project I decided it was best to just answer and not ask any questions. He quickly closed the door and went running down the hallway.

As the minutes passed I could hear Robby running around the house and up and down the stairs. I finally decided to abandon my work when I heard the front door slam closed. I found him running up the stairs, talking on the phone with his little hand wrapped around my debit card. 

He must have sensed my displeasure by the look on my face because he immediately began to justify his actions. "Don't worry Momom. I'm just getting you a present. It's okay, the man on the phone told me all I had to do was read him the numbers and then you will never tear another pancake. It's going to be great Momom. It's Guar-AN-Teed!"

I took the phone away from his eager little ear and calmly spoke to the individual on the other end. Robby apparently called the 800 number on the infomercial and was in the process of ordering the Perfect Pancake Pan. Thank goodness I caught him with my debit card before he read the numbers. A few minutes later and I'd be part of the "pancake revolution."

Home Sweet Home

We had a great time on our Bahamian vacation. With the exception of one day, the weather cooperated providing us with sunny and warm days to spend playing in the pools and ocean. Robby was partial to visiting the aquarium (which we did at least a dozen times) and feeding the various sea animals. Of course feeding the Koopas was his all-time favorite activity and one which we did at each opportunity. 

However, all good things must come to an end, and Saturday morning we woke and headed home. Robby's tears which he shed on the way to the airport were a distant memory as soon as Charlie Cat met us at the door. It was certainly more fun carrying the luggage to the car before we left versus lugging it all back inside after we came home.

Yesterday while Robby happily played with his feline friend, I trudged my way through the mountain of laundry that we had accumulated on our vacation. I continue to be astounded that three people can dirty so many clothes! Scott spent the majority of the day vegging out in front of the television, flipping between various sporting events and movies that he has seen at least a dozen times. I think that we all needed space and time to decompress after the non-stop togetherness and excitement during the past week. Few words were exchanged, and we all seemed content being alone in our separate rooms.

The quiet broke as soon as I put dinner on the table. Robby started chatting about our vacation and relived his favorite adventures. I was happy to be sitting around our dining room table, eating food that I prepared. Although the food at the resort was good, after awhile it all started to taste the same. It was nice to have familiar and distinct flavors again.

Although I could use another day or two to decompress, today I resume our summer schedule. I'm still feeling out of sorts and I'm having a difficult time prioritizing my projects. Hopefully I'll be able to figure out where to start soon because I feel like I'm spinning my wheels right now. I guess my brain is still lounging in the Bahamas.