My Life as a PFFD

I am writing this to share the life of a disabled person, specifically a PFFD, prior to WWII who grew up in the 30s. Life was different and medicine, knowledge and sophisticated equipment were not available as in today’s world. A month after I was born, which would be about February or March of 1931, I was whisked away to a hospital to ascertain the problem related to my right leg - hip. X-rays revealed no head to the femur and no hip socket. There were no known cases to compare. I was told later there was one other a female who died before her 12th birthday. The diagnoses were, rather unique and quite descriptive: “Congenital Absence of the Proximal 2/3 of the Femur and Acetabulum.” That’s easy to envision, no trochanter and no hip socket.
Unable to walk, I had to wait three years before anything could be done, and sometime in 1934, I went through some kind of exploratory surgery (all these records were lost) They were unable to “fix” it! However, I was at that time fitted with a prosthetic device that kept my leg stretched preventing me from taking any weight on my leg. It was designed with a padded ring (called a ring brace). All my weight as I stepped on the right was taken at the crotch, enabling me to walk. This was a unique brace made by “Charlie the Brace man” who ran the brace shop for the Children’s Hospital, in Brookline (Boston MA), now known as The Children’s Medical Center. Initially, to prevent weight bearing on the leg, two strips of a heavy adhesive material, taped to the both sides of the right calf, about two inches in width and about six inches in length with hospital webbing material sewn on the bottom of the tapered end of the adhesive (tapered to the width of the webbing material. This webbing material was threaded through a spindle attached between the two bars of the brace about two inches from the end of the brace, which had a rectangular piece of steal about ½”x ½” x what-ever the width of the brace for person three years of age. There was a key (like the old roller skate keys for those who remember) that fit this spindle. I would then have to wind the threaded web until it pulled my leg such that the brace was snug against my crotch and I could than walk, very difficultly but I could walk.
In those days plaster cast was used to immobilize a person during healing and convalescing after surgery. To remove the cast a carpet knife was used. If you’ve never seen one, they are a curved blade about 2 inches in width with the end curving around to a sharp point. The doctor would than cut the sides so it could be removed and if necessary put back together for further healing by strapping it shut. Well when the doctor doing this, did the unthinkable. While carving around the Achilles tendon the knife apparently slipped and severed the tendon. It was sewn back together, but the foot flopped around after that and no longer functioned normally as it should. This would haunt the surgeon later on in life. I felt, in retrospect, as a penance for this orthopod pup, Dr William T Green I became his patient for him to resolve. In retrospect, this accident was a Godsend. If the foot were sturdy enough, I probably wouldn’t be here today. Because I was so active I probably would have stabbed myself to death with the head of the femur.
Somewhere between age 3 and 6 or 7, a new method to attach to the brace was designed. I was having difficulty walking. For some reason, as I walked along, my left foot would buckle bending inward causing me to fall. To counter this I began wearing ankle high shoes supporting the ankle. Making use of this, the right shoe had a ½ leather strap attached to the heel, the length depended on that which was necessary for the following: The strap was equipped with a buckle and holes, as a regular belt, the end was looped around the bar on the bottom of brace and then fastened using the buckle which was near the base of the heel and brought up taut to keep my leg stretched, again, to prevent weight bearing. I walked like that until 1942. I should add that I was able to attend public school. In the 30s disabled persons were institutionalized (closeted) into “homes for crippled children.” Well I came from a town with a progressive minded Superintendent of Schools, who allowed me to take tests and because of my high IQ, I was able to attend a public elementary school. I may have been one of the first “cripples” to attend a public school.
By 1942 new ideas were unfolding. In April the femur was pulled from the obturator foramen. A story I would hear repeatedly as each year he would tell his new pups and residents when the femur was pulled out fluid gushed out. Apparently a sac had formed and built up with synovial fluids protecting me. Had the femur punctured this membrane it would have penetrated the peritoneal membrane, and, once again, I doubt I would be here today. My leg was in traction for a few weeks preventing the femur from slipping back in the obturator foramen in preparation for the second phase of surgery. In June of that year, an ilio-femoral fusion-the first ever was successfully performed. For the first time my femur was attached to my body permanently. I now represent 73 years; and, counting, of postoperative ilio-femoral fusion. Exactly how this was fused, to this day I have no idea, but, the femur was fused in 30 degrees flexion and 10 degrees abduction. In this position, I would be able to sit but I would walk with a limp. It took about 3 hours on the operating table using fluoroscopy, after cutting the sharp point, about 1/3-1/2 of the femur, and somehow it was attached to the ilium. I was in a body cast from below my armpits to the left knee. I was totally immobilized for 10 weeks while the bone knit and recovered. Remember this is the dark ages of surgery, before all the sophisticated equipment, antibiotics and chemical anesthetics. In the 30s and 40s, there were no antibiotics other than sulfanilamide. A huge tablet about ½” in diameter and ¼” thick, a real struggle to swallow. The infections that were part of the healing process left some ugly suture lines and stitch marks that were replaced with masses of connective tissue. Immediately after this surgery, after being brought back to my bed in the ward (5 Lower) I began getting chills and shook until my body temperature rose to over 100 degrees and my body temperature then fell to where I got the chills again. A cycle that lasted several minutes I can still hear Dr David Grice saying, “Nurse 500 cc of blood, stat!” After receiving the blood I became quite cold. They placed a 2” felt blanket over me to keep me warm. To this day I get very cold at night. I need a blanket even if it is 90 degrees. It was like a malaria attack. They convinced me that I did not receive blood from my father. He had malaria when he was in the service. Coincidence?
A couple of things stand out in my mind subsequent this surgery. In those days, catgut was the choice for sutures. These held the wound closed and were removed 10 days after surgery. Not a very pleasant experience. The way this is done: a window is carved out in front of the wound, the cotton wrapping and gauze is pulled away exposing the wound. For some reason, Dr Grice, the orthopup at the time, took the back of the scissors and thrust them toward the wound. I reacted and pulled my body in the cast such that if possible I would have turned on my left side to avoid that lunge. I’m not sure who was more surprised - Dr Grice for my reaction or me. I knew he would not have shoved those scissors into my wound, but I reacted before thinking it out.
I think that effected the positioning of the fusion which required additional surgery later on (1951).
In 1944 I began having hip pains and it was thought that the fusion done in 1942 was pulling apart. So I was to go through a procedure to reinforce the femur. The procedure included duel surgery. From the tibia from my left leg a slice of bone would be removed and grafted to the right femur. This was attached with screws. At the same time, somehow, Dr. Green made a patella for the knee joint which was very effective and still in good working order today. There was a price to be paid. I was on the operating table about 12 hours; went on it about 8 am Wednesday morning and woke up about 2 pm Saturday, briefly, to see my mother and father with looks of horror on their faces while I had an IV going in my left arm and blood going in my right arm. I was out for almost 2 weeks. During that time I received 5 pints of blood - three on the operating table and two at different times while I was still out. Once again I convalesced about 10 weeks in a full body cast from just under my arms to the tip of my toes on my left leg. The price I paid: I lost my immediate recall system. Something I didn’t realize until around 1972 when I began putting my life together.
Because I hadn’t finished growing, other than planning, nothing further could be done. Dr. Green had developed a method of determining when a person’s growth would be complete through X-raying of the hands and wrist. I would have to wait.
They also weren’t sure how to continue. At some point in time discussions took place which included such ideas as rotating the foot and using the ankle as a knee joint; or, just amputating the foot. The problem was the length of the leg. As it stood my foot was 14” from the ground. In order for the ankle to line up with the knee joint of the left leg my right leg would have to be shortened 3 inches. Well, this wouldn’t happen until after I graduated from High School (1949) - the beginning of a nightmare that was to last until 1971.
I entered college in September of 1949 and by December my tonsils were so bad I had to have a tonsillectomy. At age 18 that was no fun! I couldn’t get a job anywhere because no one wanted to hire a cripple, so I had to work in a bowling alley and set pins (now pins are automatically reset by machines), but, in those days a person had to sit just above and between the pits separating one lane from the other. All this for 5 cents a string…but, I did earn spending money while in college. Later I slipped on ice and wrenched my back to such an extent that I couldn’t walk and was bedridden 6 weeks. During this recovery, I ran a temperature of about 103-104 degrees. I asked my mother to call Dr Grice and tell him and make an appointment. I visited the doctor and was told I probably would never walk again and was fitted for a special back brace. Bear in mind that in the 40s and into the early 50s there was a serious polio epidemic. Four of my class mates came down with it; 3 with non-paralytic polio, and, one, with paralytic polio. In retrospect I was never sure that I didn’t have non-paralytic polio. I was never tested for it. Somehow I recovered from the back injury and survived my first year of college. By this time the plans were complete to “fix” me so I could become cosmetically acceptable to society and hopefully gainfully employed. The plans were to fix the leg to swing anteriorly-posteriorly (it swung laterally, and I developed a unique way of walking), shorten it so that the ankle would line up with the left knee joint and then amputate the foot such that the heel could be used as a cushioned stump. This would take 3 surgeries and was to be done over the next 3 summers. In retrospect I should have done this all at once so that I could attend college without any interference. As it were I got very little out of my undergraduate years of college.
In 1951 I entered the hospital expecting to go through a muscle transplant to correct the swing of my leg. However, after getting there, Dr Grice visited my bed and explained that because I was missing a muscle, I don’t remember which, but I do know that I only have one hamstring where normally there are two. He said, what they decided had to be done was: they would have to fracture the femur, rotate it 55 degrees from lateral to anterior and secure it. I was prepared for a muscle transplant and this change of plans hit me like a ton of bricks dropped on my head. He said think about, if you would like you could go home and let us know of your decision. After going through some real emotional trauma I decided, I’m here I will go through it and get it done. Unfortunately there is more to this sordid story. In the 50s the types of anesthesia and pre-op preps had changed. The anesthesia of choice was Sodium Pentothal, better known as truth serum, replacing the antiquated GOE (Gas, Oxygen and Ether combo) and pre-op was now a Phisoderm scrub replacing the alcohol scrubs. Both have disappeared from the scene, I wonder why? In any case Sodium Pentothal is administered as so many ccs per kilo-gram of body weight. I was not aware of that and neither was the nurse who weighed me the second day of my hospitalization. I was weighed in at 168 pounds fully clothed with brace on. In reality I had 8 pounds of clothing and prosthetic that should have been deducted and on top of that I lost 8 pounds by the time I was ready for surgery. My actual body weight at time of surgery was 150 pounds. Because of this error I was given 9% too much sodium pentothal. When I woke from this surgery, I was so hungry and thirsty (I felt as though I had been on a weekend drunk) I drank a gallon of water, ate a dozen eggs (I can remember downing them raw and went through a loaf of bread. Ms Kerr, the Nurse Supervisor and former Major during WWII, over the ward, was visiting me and I can remember telling her to take the blanket-blank IV (I was having an IV administered at the time, and I hated them), out of my arm reminding her of the fluids and food I just consumed. She did, and then complimented me for having such a well developed left leg - the only person in my life to recognize the positive side of me. This surgery did the job. By straightening my leg gait I was able to walk better and it relieved the strain on my back. I was able to make significant improvements physically.
In the summer of 1952 I was to go through the most critical surgery of my life - a shortening osteotomy. I was told, the dangers of a shortening osteotomy is, I could develop osteomyelitis, a permanent debilitating bone disease. What could I say? I was committed. I consented. The surgery was never complete without some additional drama. While administering the anesthesia, sodium pentothal, something happened and they were trying to put a mask over my face. I asked them not to put that mask on me, I kept pushing it away as little did they know I was recalling something out of the past. Unfortunately, in 1942, my roommate could not swallow pills. In those days pre-op patients were given Nembutal so they would be asleep for anesthetizing. He couldn’t take the pills and Ms “Maggie’ Maguire the head nurse of 5 Lower, tried to scare him into taking them by telling him, if you don’t take this pill and you vomit when they put the gas mask over your face they won’t know it and you will smother! That fear made me want to get off the table. I was so scared that I looked to my right and saw the anesthesia tray and told them if you put that mask on my face I will knock over the bottle of cyclohexanone, a highly explosive anesthesia requiring all personnel in the operating room to wear shoes with a ground to prevent static electricity from building up and discharging. Anyway, that is when Dr Henry Banks, the anesthesiologist blindsided me with a vicious upper right cross and that is all I remember until I woke up post surgically in my room. My tongue had a hole in it, I could not discern right from left, I thought the attending nurse, Julie Wadeleigh was twins as I saw her on both sides of the bed. As a result of that, I have a TMJ jaw, tinnitus and have frequent headaches. Interestingly enough, after this surgery I realized I was different. My foot was now 17” off the ground. I have excellent peripheral vision (then it was about 175+ degrees. With my foot 14” off the ground I knew exactly where my body was at all times. I now had to re-learn where my foot (leg) was. This change was never part of a discussion with the doctors! On top of all that happened, I was to meet the only person I would ever fall in love with, a beautiful blue eyed nurse. I had to let her go because I had 2 operations and two more years of college and an uncertain future employment-wise, From past experience I knew it would take about 5 years to recover from these surgeries. I’ve never forgotten her! She changed my life forever!
The summer of 1953 was to be the final surgery to “fix’ my disability.
After graduating from college, instead of going to work I would go to the hospital. Before the surgery, I was to meet several prosthetic companies; hopefully, one of them could build prosthesis for me. The difficulty was the length and girth of the stump only one company could come up with a design. This was the Boston Artificial Limb Company (I believe that was the name. I have since forgotten the name [a Mr. Martinez?] of the owner). Because of the Korean War, the medical profession learned allot about Symes amputations. This was the type of amputation I went through. The advantage is the heel is used as a cushion for the stump. If done correctly a very comfortable stump. Unfortunately the surgery was sloppy. Because my Achilles’ tendon had been severed and re-sewn together in 1934, when the heel was brought around, they failed to correct for it.

Before the Amputation After the Amputation with a Conventional Prosthetic
(June 1953) (September 1953)

Things weren’t quite right. Because of the sloppy stump I was in quite a bit of pain when I walked bearing weight on the end of the stump. I would make appointments with Dr Green and he would do nothing about. Each time I went to see him he would slough me off to one of his resident pups. He would shave the callous and say that should do it. It didn’t. Because the pain continued and Dr Green would do nothing about, I tried making appointments with other doctors. They wouldn’t have anything to do with me. So from 1953 to 1971 I walked in excruciating pain. I had a home in Acton, MA. I could just barely walk by now. For some reason, someone was writing about me in the local newspaper. I was advised to go to the Emerson Hospital, in Concord, MA where I would meet a Dr Leroy Wolf (I think that was his name) and asked him if he could get me out of pain. We discussed my condition and how the stump should be brought over correctly. He understood and at the same time removed the bone spur that was pressing against the nerve that was causing me the pain. The surgery was a success. I was finally out of pain!
I sent a note to Dr. Green letting him know I was finally out of pain and assuring him that the concept of “fixing” PFFDs was correct and despite everything, he did the right thing. I also asked him to compliment Dr. Wolf for his excellent work. The first surgery I went through without a hitch. This was to be my last correspondence with Dr. Green. Dr Green never documented the surgery or the work he did on me, as he had promised, and, by not doing so he set the PFFD population back 20 years. It wasn’t until around1972 where there is much literature on the subject. The work performed on me was well known in the medical world. In 1951 I demonstrated my gait in an amphitheater to some 200 top orthopedic surgeons in the country, physical therapist and other medical personnel. After this demonstration a Dr Seaver came up to me advising me that a person can only go through so much surgery. I assured him that I was committed and would see it through to completion. Little did he know that in 1944 after I recovered from the surgery I told Dr Green I couldn’t take any more surgery. Little did I know that I would undergo 11 more surgical experiences! I have spent about 48 hours of my life on an operating table under anesthesia.
Despite all this I was able to maintain, successfully I might add, an excellent work record. I was a New Product Development Engineer. However, I was to learn that the aging process can have some interesting consequences on our bodies. My arthritic bones began wearing out and by 1983, the hip of my good leg seized and hip surgery was imminent. By this time I’m living in Orlando, FL. I met a Dr Flynn and we discussed Hip replacement surgery. Since there were no known cases of a person with one-leg having hip replacements, I had to make the decision, should I or should I not? If not a success, I would have been wheelchair bound from age 52 on. He did his best assuring me he could do it. I agreed and it was a success. I could walk again, pain free. However, this wore out and in July of 1992 I had to have this replaced. I’m retired living on a limited income (SSDI) as I am no longer employable by Southern standards. My Humana Insurance directed me to a Doctor, a DO. I had no choice. While fitting the prosthetic acetabulum, for some reason, he aligned it to the right hip positioning (30 degree flexion and 10 degree abduction). When I was recovering and taking my first steps I knew something was wrong. There was, and 3 months later it broke. In October of 1992, the third hip replacement (and hopefully the last) was installed. From that day on I used crutches to prevent it from wearing out as I no longer want to go through any surgery of any kind. Prior to 1992 I walked without any aid, just a unique limp. The cost of today’s surgery is astronomical. To give you an idea of how they have changed: In the 30’s, it cost $14 a week for hospitalization; in the 40s $22 per week and the 50s $100 per day. Because of my parent’s financial situation, Easter Seal Society paid for the Doctors bills. In any case I survived and despite everything I have the following accomplishments:
1. In 2nd grade I played the role of Abe Lincoln reciting the pre-amble to the constitution;
2. In 5th grade I was manager of a hardball baseball team, playing catcher, the team was named, The Boston Red Sox, one of an intramural league. We came in 2nd, the winners, of course, The New York Yankees;
3. In high school I was a class officer, Vice President, home room officer, Business Manager of our School magazine, Chairman of the Class Ring Selection committee, 3 Letter man in Sports, Basketball, Baseball and Track (manager of course) and I graduated with honors;
4. I was a successful Engineer for 26 years with the (20 years with the WR Grace Co.
5. I have 2 patents and have written patents for 2 other people;
6. I’ve flown over 100,000 air miles and driven over 800,000 miles;
7. I’ve been to Europe twice, Canada 5 Times, Puerto Rico twice all over the United States as far West as Aptos California, lived in San Antonio TX, Bradford PA, Butler NJ, Winter Park and now Daytona Beach, FL (Came to FL in 1980);
8. Owned a business and failed miserably at it after running out of money;
9. I’ve been married and divorced, no children;
10. Have 10 years of college;
11. A registered Chess Player since 1949. Played in over 1200 tournament games, including 9 US Opens and 2 Senior Opens;
12. Played Golf for several years. A typical Sunday golfer with about an 18 handicap;
13. An ADA Advocate.

Did I let my disability interfere with my life?-Absolutely not!!