I’m Still Here with Hope and Courage

We live in a world of questions and experiences.  Some people have doubt and some people have drive.  None of us know what our future will hold.  When I was a child, I said, “Hi” to everyone.  My parents thought I would go home with a stranger.  I was a happy-go-lucky kid.  I am still that way.  I just love people, all people.

In 2013 I was working at my current employer helping the homeless population with grants from the government for the agencies in my state.  It was a busy job and I worked many, many hours.  I have had migraines since I was 30, so 23 years of them.  I remember my first one and I will never forget that day.  I remember that I couldn’t keep my eyes open wide, just little slits to try to watch skating on TV.  I had to lie down.  The pain was in my temple and the light bothered me.  I lived in three different states throughout these 23 years and the neurologists all said that my migraines were from hormones.  My doctors never ordered any CT scans or MRI’s.  My current neurologist had me document all of my migraines and I had to incorporate the food and the stress.  I had 12-18 per month and still went to work.   I mean, you can’t call in sick every time you have a migraine.  I would say that I would be at 75% of my normal working capacity.  I would get sick at work and then keep working.  I took medication at the onset of the pain; at first Imitrex or Zomig pills.  If it didn’t go away, or if it was too severe I would take an injection of Imitrex.  Chuck would administer them in my arm for me.  It worked all of the time.  I would have to stay in quiet and darkness for about 40 minutes to an hour.

While at my job, I worked long hours and didn’t stay fit like I used to.  I knew that and it bothered me.  I used to cycle and I did step aerobics about 3-4 times a week.  I was always an active person, however, I was in the worst shape of my life.  I thought if I ever have the time I will start to workout again.  One day I decided to actually call the gym and ask for an appointment with a trainer.  I figured that would be a good start.  So it brought me to the gym.  It was the first time that I had met the trainer.  She put me on a chest machine.  I was sitting down and pushing out; a chest press.  Immediately I said, “Oh, I never felt that before”, while holding the back of my head.  It was a sharp pain that was different from a migraine.  Most people say it is the ‘worst’ pain they have ever had.  I just thought it was the ‘weirdest’ pain that I had ever had.  My headaches were always in my left temple, only sometimes right.  This pain was in the back and it was like a burning feeling.  I put my hand on the back of my head and tried to rub it, I couldn’t massage it.  I didn’t feel any nausea or dizziness then and I wasn’t off balance so I brushed it off and told her that I have migraines all the time, so we should just continue and that I felt fine.  That was not the truth, but I was embarrassed and stubborn; I just wanted to continue.  The pain was a burning pain that stayed in the back of my head.  So we went on several machines for about 15 minutes.  Then I started feeling nauseous.  I told her I thought I was going to be sick.  I came out of the ladies room indicating that I had been sick but it was only water.  I said, “I am just like The Biggest Loser” and laughed.  I wanted to finish without stopping in the middle.  I wanted her to know that nothing was wrong and she trained me correctly.  I had gone to the gym with Chuck, he was working out.  I didn’t even think to tell him.  I just thought it was because I hadn’t worked out in a while.  I finished the hour and Chuck drove home.  After I got home I was getting ready to get in the shower and I started seeing double.  I was looking in the mirror and it looked beveled.  I saw two of me!  I told my husband, “If you hear a thud, it’s me”.  I just thought I had a weird headache.  I had never had one that affects your vision.  The pain in the back of my head, getting sick and seeing double are all symptoms of an aneurysm.  Signs that I never knew.  What did I do?  Nothing!  I thought I had a weird headache that affects your vision.  My step-father had headaches like that and I was going to see him that night, so I figured I would ask him about them.

Two weeks later, I still had the pain in the back of my head.  It was there, but it was not as sharp as it was initially, it was consistently dull.  I decided to call my neurologist.  He said that he was worried after I told him that I couldn’t massage it.  He said that it sounded like it was under my skull.  He wanted me to have an MRI.  So I had the MRI done days later.  The radiologists told me that they called my neurologist and was waiting for instructions, that I had a large aneurysm and shouldn’t leave yet.  He called back and said that he wants me to go home first, get my husband and get to the hospital.  I live in Johnston, Rhode Island and I was in Providence, so this is all within 5 or so miles.  He told me that I would stay overnight in the hospital.  What are these people telling me?  An aneurysm?  Don’t people die from aneurysms?  My pain isn’t that bad.  I didn’t really know what an aneurysm was or what the symptoms were anyway.

In the ER, the staff told my husband, Chuck, that I had a very rare 31mm Giant Fusiform Aneurysm.  This meant that it was in the ‘Giant’ category because of its size.  It was over an inch.  Fusiform means that it is in the middle of 2 vessels.  I would need 2 arterial bypasses on the left side of my brain.  We would need to plan an urgent surgery, but the only doctor that would do this type of surgery was in the airport taking a plane to go on vacation.  The staff was texting him.  He told them that he would need to plan the surgery, but they should do an angiogram that night and then let me go the next morning.

I stayed overnight.  I felt so scared.  I thought I was going to die just from the testing that they were going to do, an angiogram.  They went up my groin into my brain.  That was a long way!  I could feel it!  Well, I survived and I was tired after the waiting and the testing.  Chuck came in and stayed with me until about 1 in the morning.  He made me feel better just by being there.  I had a male nurse that was so kind.  He told me that he would keep checking on me.  I actually did sleep.  Chuck wasn’t sleeping, he went home and started researching.  What does this mean, what kind of doctor should I look for?  Are there reports on surgeons and hospitals?  Would I be able to get through the surgery?  What kind of recovery?  You have to know Chuck, this is what he does; he researches and he does it well, thank goodness.  He found a doctor in Boston who was the perfect neurological surgeon that I needed.  The initial doctor who had gone on vacation advised me to go to this doctor because “I was dealt a bad hand” he said.  He knew the doctor in Boston and thought it would be good to have that second opinion.  All we would have to do is get an appointment and it was only an hour away.  Chuck faxed over the images that the hospital took.  His Nurse Practitioner, Dede, said that I needed to get there quickly.

We met with the doctor, he said that it was a very rare aneurysm that it had started bleeding and then stopped.  That was the pain in the back of my neck.  I would probably have speech problems after the surgery because it was on the left side of my brain.  Even though I had 23 years of migraines and got sick from many of them, I just didn’t feel as bad as they were saying.  I ended up getting very nervous after that meeting.  He told me not to work and to be calm.  Be calm?  The surgery would be 3 weeks away!  The pain wasn’t as bad because it had stopped bleeding.  It was just that dull pain.  Why so long to wait?  He said he would need to study up on how he would scope the surgery because it was such a complicated one.  He said that more than likely it wouldn’t start bleeding again.

While waiting for the surgery, we continued to educate ourselves on what I would be going through and what steps to take.  I wasn’t sure if I would make it.  I wasn’t sure if I would have a stroke during the surgery.  These were the unknowns.  I decided that if I woke up I would do all of my homework that the doctors gave me and more.  I practiced my name so after surgery if they asked me I would be ready.  I rehearsed the President’s name too.  So I waited and waited for those weeks to go by.  I had been told not to work and to be calm, no stress.  Hmmm, how do I do that?  That was torturous.  They had advised me to make sure that my last will and testament was completed, so I had to work on that.  I thought I had to cut out the stress!  I just didn’t understand all of this, but I did what they told me to do.  I did spend a lot of time with my family members and friends.  Everyone wanted to take me out to eat.  So we went to all of the great places that I liked to go to in RI.

The night before the surgery we stayed in a hotel next door to Mass General Hospital.  My mother came with my step-father, my sister and her husband and Chuck, of course.  On the morning of the surgery we were in the Admitting Room very early.  I was whisked away so quickly.  I had thought I would be there for a while waiting for the anesthesiologist, but that was not the case.  It was like I was in a hurry.  They pushed me away and it was hard to say Bye the way I had thought I would be able to.  I thought I would be able to hug everyone that had come with me.  I thought I was being robbed of my feelings.  If this was the end, there was no time spent to say how much I loved them.  There seemed to be no time.  I just yelled “Bye” to them and “I love you”.  Chuck ran over to squeeze me and told me how important I am and that I would get through this as they wheeled me away.  Chuck and my other family members were yelling back, “I love you”.  Now I was really scared.  I was alone. Then Dede, the NP, came into my room that I was in and gave me a medal.  It was a medal of St. Jude on one side and St. Anthony on the other side.  She put it on my wrist band.  It was HOPE and we shared that HOPE together.  She knew how rare this was and how gut wrenching too.  Shortly after would be my journey.

The surgery for my Giant Fusiform Aneurysm with 2 bypasses went over 10 hours.  It was very tough on my family who were in the waiting room.  I can’t imagine what they were going through.  What about the doctors?  I had joked with him saying that I needed to bring them snacks for a surgery that long.  He came out and told them that I was in the Recovery Room and that Chuck could go to see me.  I lived through this!  I didn’t have a stroke!  Chuck went in.  I was really out of it.  Chuck asked me what my name was.  I responded, Dawn Mureddu—wow that was fantastic!  Thank goodness I practiced that!  Step one, done.  By the time I got up to my room there was a lot of swelling on my brain.  I couldn’t talk anymore.  They thought I may have had a stroke.  They brought me down to get it checked.  Thankfully I hadn’t had a stroke, just a lot of swelling.  I was put on oxygen for a couple of days and they gave me medication for the swelling to go down.  I was in for a long recuperation; I couldn’t talk, I couldn’t walk!  I was in the ICU.

The first day I was pretty out of it.  The 2nd day I was coming to.  The 3rd day I had a slight palsy, but I was trying to start to work with therapists there trying to walk and talk. I had asked Chuck to video my recovery so that I could see myself getting better.  I had no idea how I was going to be and what it would be like.  When I look at it now I am so moved watching myself trying so hard to get better. It was time to start learning over again.  I describe myself as being like a one-year old.  I had to let myself make a new path in my brain so that I could learn everything over again.  As I write this, I remember thinking to myself, ‘what is going on?’  Why can’t I speak?  What is in my head won’t come out of my mouth.

They tested me with flash cards.  I didn’t know what a house was.  I knew that I should know what this is.  It was confusing.  Why can’t I come up with it?  Even if I could think of what it was, I wouldn’t be able to speak it.  What is that all about?  The therapist showed me 4 colors.  She said, ‘this is red, this is green, this is blue and this is yellow.  She pointed to them while she was talking to me.  She asked me to pick out yellow.  I didn’t pick out that yellow.  My heart sank inside of me.  Will I be able to do this?  It was tough.  I knew I had to keep trying day after day.  This is what I promised, that I would do whatever they told me to do and do more.  I remembered that and I just had to.  I wanted to be ‘me’ again.  Then one day, I got  ‘house’!  Well that was it; I was so ecstatic!  I used that to be confident and to be proud.  It was that HOPE that I needed to keep going.  I was always a positive person and thought this was my lucky day.  Maybe I could do this?  Could I remember that word and say it the next day?  I did!  Yes, I did that!  That HOPE was there.  I kept trying and learning.  By day 8 if I could walk and make a cup of tea without any help from anyone I could go to a step-down unit.  I stayed in step-down for 2 days.  I went from Mass General to Spaulding Rehab hospital for 2 weeks.

Chuck had bought me an iPad and had installed aphasia apps on it.  These apps allowed me to practice things; comprehension, naming, reading, writing and math.  In addition, Spaulding rehab also installed their proprietary app as part of my cognitive therapy.  For some reason it was easier for me to read something then to say it, so some apps helped with that.  In the days ahead, I started getting more words right.  I would remember them the next day as well.  The day I got ‘harmonica’ was the best day.  It gave me such a boost of positivity.  I had gotten that wrong so many times.  I couldn’t get it.  I started to walk too.  At first slowly, dragging my foot behind.  We would walk daily and I got better and better.  I did all of my homework and asked for more on the weekend when my doctors were off.  I went to all of my therapeutic appointments.  I had them 5 days a week in the rehab hospital for 6 hours.  One great day on day 14, we went outdoors.  It was a beautiful Spring day.  There were birds, flowers and people.  My therapist was wonderful, they all were.  They had patience.  They were positive and I believed I could do what they asked me to do.  My nurses were great too.

I was in the hospital and rehab for 22 days total.  I learned speech, numbers and math, physical and occupational therapies.  I just did what I could do.  I was happy and proud of the little things that all added up to big things in my mind.  On the 22nd day I was able to come home.  I was very excited, I was able to come home a week earlier than the doctors had originally thought.  On the way home, we went out to lunch and went food shopping right after.  I held on to the carriage.  It was a sense of normalcy.  My speech wasn’t the best, my physicality wasn’t the best, I was different, my hair wasn’t filled in, everything took more time to do.  The doctors and therapists didn’t want me to be alone right away.  Nothing else was different except that I hadn’t driven in about a month.  I didn’t care, I was still here.  Someone said something on their radio show one day and it stuck with me; “I have all of this to prove that I am still here”.  And I believe that still now.  I started going to out-patient rehab.  I also continued with my apps.  Some of my sounds came out similarly; ‘S’, ‘SH’ & ‘CH’.  They all sounded the same when I spoke.  I had to practice certain words, repeating and repeating.  I balanced our checkbook, another feat.  At rehab I tested my strength and balance.  I got stronger.  I never canceled an appointment.  I went to everyone.  I always had HOPE and it would take me to the next appointment.  I played games like Solitaire, Spider Solitaire and Soduko.  If anyone wanted to play, we played UNO or Scattergories.  Those games stimulated my mind.

I knew I needed to get Math down because my job required it.  My therapist made sure that she gave me Math problems to work on.  After that I hoped that I would be ready.  And so after 10 months of being out of work, I went back.  I started part-time for a couple of weeks and have been there ever since.  I am now working as a supervisor and I love my job.   The first day I was so nervous, but excited at the same time.  I had to get settled, it took almost all day for my peers to come over and say hello and to get my computer and the phone set up.  The therapists told me that not everyone would understand.  Most people did, but after many months of working, someone told me that I had asked them the same question before.  She gave me a hard time about that.  This kind of thing would make me feel very small and inadequate.  I had a Speech Language Pathologist for that.  She is available online.  I ‘Skyped’ with her.  She also does cognitive rehab, treatment for aphasia, yoga and meditation.  I used her for weekly meetings when it was necessary.  She showed me how to ‘fake it ‘til I could make it’.  She inspired me to be me!

Sure there were bumps in the road of recovery.  My brain was so active.  It was hard to sleep.  That took some time but I got through it.  I did not take drugs for not sleeping.  I did not take naps, never liked them.  I would just get into my bed and try not to move.  I would count backwards, try to think of good things.  I tested my patience.  Eventually it went away, but it took years.  I am back to being a good sleeper.  I had a great supportive husband that was by my side cheering me on.  If I had a tough day he would tell me to start again the next day.  It was logical and I believed it.  I was told that my recovery would be 5 years!  I thought how could that be?  I did notice a difference with the first few years.  Then from 4 years to 5 years I noticed that my fatigue got better and I started to remember things a lot better then in the last few years.  I got back to the gym.  I found that trainer and she trained me for more than a year.  She knew that I would come back.  I had spoken to her a few times on the phone.  I told her how she helped me to find out why I had 23 years of migraines.  It was great getting back to the ‘real’ gym though and not therapy.  It felt wonderful!  She left the gym after 1 year or so and the gym ended up closing.  I decided to go to another gym with Chuck.  He thought it would be good to get another trainer.  There was one that I thought would really make me work.  He was a Marine and I wanted him to train me.  For the following 3 years I learned so much about myself and my abilities.  With both of them helping me build my strength, I became much stronger and more fit than when I was younger.  That helped my confidence so much.

My nurse practitioner, my doctors, my surgeon, my therapists, my trainers, my Chuck and my family are all people that saved me.  If Chuck didn’t research that first night when I was in the hospital in RI he wouldn’t have found my surgeon in Boston.  He is the kindest caretaker too.  My surgeon is my hero and will always be my hero.  I thank God that I have my life back.  I am a miracle. I know that and I appreciate that.  I am blessed and I still am a happy-go-lucky person.

Some things that I have learned is that you always need support from those that love you.  Listen, be patient on both sides.  Be patient to yourself too.  Don’t be afraid to ask the medical staff important questions. When I am tired my vocabulary comes out funny.  We laugh about it.  Just laugh.  You have to have some fun too.  Think about how lucky you are to be here and enjoy your life.  It could be so much different, but it’s not.  I am me.  I am not exactly the same as I was.  I am a somewhat different Dawn who I now know and love.

Click the photo to learn more about Dawn Mureddu.