THOUGHTS ON QUALITY OF LIFE. BY DON CURRAN

Overview:

I was diagnosed exactly five years ago and I thought the best way to approach this would be to retrace my steps and look at the physical and psychological changes in my life. What part did MD play in this process? I would like to identify what help I really needed and what other life changing events this illness activated that would have had to be dealt with at some stage of the aging process. How well am I coping today and with full understanding by myself and timely support would the process have been faster and easier with less emotional scars?

Statements and observations:

The clinician does not explain enough about my eye problem

At the time of diagnosis I am not sure the client is ready to listen as many - like myself - when they hear the work blind go slightly catatonic. This perhaps needs a review later at the patient's request with an individual who has experience with folks at various ages and various stages in their life getting very bad news. This is similar to dealing with patients who are defined as terminally ill. (Obviously not so severe but impact can be similar)
The onset of MD may bring around other life changing events which would have been difficult to deal with but now get bundled under the blind event.

Events such as retirement, relocation with a total change of life style may have been hard to deal with but become much more of a hurdle when bundled in with blindness.

This could be the first realization of our fragility and the fact that mortality is staring us in the face for the first time

When I was working in a career I loved and life was full idle thoughts on mortality never happened as it almost felt as if I was indestructible and anyway would deal with that when it happens.

In a week of 168 hours approximately 60 were taken up with work and possibly more mentally. Now no interface with humans as before and an empty calendar to face.

Help and adjustment is needed in that when this happens it is usually pre-planned but the onset of MD accelerates and also makes it difficult to adjust to other activities.

Task orientation is important and a process has to be identified for each activity with alternatives being found.

Constant re-assurance is needed that most activities can be accomplished or alternative methods found with an emphasis on the patience needed to adjust to these. Also alternate activities which are enjoyable need to be found.

There is a tendency to not only retire from your employment but also retire from being a useful member of the family leaving all the running of the family affairs and managing the home to others no longer being part of the family but in many cases playing the blind card and retreating into self-pity and anger.

Retirement can be traumatic without an illness in that the partner is around the home at all times and now is demanding even more attention which causes difficult adjustments for the whole family. If it is combined with adjusting to a disability it is even more challenging.

Pathway from diagnosis till today:

April 1999 I elected to have Lasik surgery after having a health check on my eyes by three different opthmologist and was given the Ok. (I later found out I had a drusen scar in my right eye which had been ignored by all three) Two weeks after the operation which was a success clouding began in the right eye which my surgeon said was the sweat glands.

No advice given as to next step and was told nothing could be done and was politely asked to leave the surgery and not return as nothing could be done. (Of course I could also impact those in his waiting room for Lasik)

July 1999 Alarmed I returned to the USA where I was diagnosed with wet MD in both eyes. A hot laser was used in the left eye to seal the leakage which was not yet behind the retina.

This was the teaching hospital in Birmingham Alabama and again just told nothing can be done with no advice on how to proceed.

October 1999 Deterioration continued so I then asked my company United Airlines to find me an excellent opthmologist and I went to North Western in Chicago. Dr Lee Jampol took extensive photos and tests and advised that he may be able to save the rest of my eyesight as their was a new treatment coming on the market but it would not restore lost sight.

This was obviously PDT, however very little was explained to me.

November 1999 Unite Airlines asked me to retire and negotiations should start immediately adding considerable stress to a very difficult situation. Depression really hit and I was given calming drugs and anti depressants which I continued for almost two years.

This was really traumatic with no emotional support or understanding of my condition and its symptoms it was extremely difficult. I was now experiencing flashing and hallucinations with both eyes deteriorating fairly rapidly.

January 2000 called Lee Jampol and he arranged to see me beginning of February when I was told it was too late that the treatment had not yet been approved and that anyway my eyes had deteriorated too far so that the treatment would have no positive impact.

February 2000 I left Hong Kong where I had lived for almost 12 years and returned to Scotland which I had left 40 years ago now retired.

Over the two following years I dealt with the adjustment with little help except the Macular Disease Society and friends I found there helped me though the mental trauma.

All the mental suffering and stress could have been minimized with therapy, understanding and support for both me and the family.

Life now - having been to the basement and back - is good and I feel I am a much stronger person for the experience. My vision impairment is a challenge but does not live with me every hour of the day and when I awake I am not hit with the blindness emotion as before and there is much more acceptance both mentally and physically. In a strange perverse way at times I enjoy the challenge.

I now very seldom reveal my eyesight problem and take a great deal of pleasure in being normal, by that I mean I function without seeking benefit from poor vision. I live with emotional scars and also guilt in my lack of consideration for others particularly my family during my transition from the sighted world to the vision impaired world. I also feel I should have been stronger and dealt with the handicap in a much more adult manner. Lastly with being open and candid I hope I can help others understand that it is OK to be angry, frustrated, go through the "why me" syndrome etc and that life can be real good again. (Most days)

Conclusion

I am not sure how much I can claim that my loss of eyesight has impacted my quality of life after the trauma as I am really pleased with my adjustment and feel that retirement, acknowledging the fragility of life and too active a mind with too little to occupy was perhaps a large part of the problem exploded by the onset of the eye problem.

Don Curran, September 2004